Category Archives: MS and Emotions

Multiple Sclerosis and Perspective

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I don’t have a great deal on my mind……about my own MS. Shoot: I think I just dangled a participle, but anyway……..My mind doesn’t automatically turn to the culprit when I’m in remission. Although it has greatly impacted my life, it still does not dictate a great deal of who I am. And this could be because I am writing from the perspective of someone with a moderate case: I am in the middle stages of middle-of-the-road, neither-mild-nor-progressive, waxing-and-waning multiple sclerosis. Ask someone with progressive MS what they think about the condition and the answer could be completely different. It’s all a matter of perspective.

My non-MS friends see my condition from another perspective: as among one of the challenges our group faces. My good friend was recently diagnosed with lupus, and so she lives with a new perspective and she has completely changed my view of my own condition: I am not the only one with ongoing problems and this knowledge opens the door from a lonely, isolated existence to one of similar understanding. I’m so glad for this. A couple of my other friends face ongoing addiction problems and so their understanding is a bit different but nonetheless helpful. One does not always need a duplicate perspective to empathize. My sister-in-law gives me the biggest laugh when our bowel difficulties— she has the autoimmune condition ulcerative colitis— act up. Two people with very different personalities can still enjoy the spoils of a shared perspective.

In terms of the world at large: I never want to imagine that my multiple sclerosis is any bigger than the dot that is our planet within our solar system, within our galaxy, within the entire universe. The perspective of Earth from a million light years away is imperceptible. In space and time, my disease is but a blip on the radar. Back here on Earth I’d rather worry about the two recent American journalists who were wrongly imprisoned in North Korea. They certainly have bigger concerns than I do. Or tread lightly when I read Eli Wiesel’s Night, and know that I am safely tucked in at bedtime. These grave views throw my own perspective into perspective.

How do doctors view this chronic condition called MS? Do they fully sympathize with patients, or do they merely look for scientific evidence and concrete solutions? Would the perspective of an MS doctor afflicted with cancer change his demeanor towards his patients? I shudder to think of that multiple sclerosis doctor who absently treated me, all the while looking at life from his own distorted angle. And yet I didn’t see life from his exact perspective (and how could I?) I am now able to indulge him his inaccuracy. As for the people who represent those with multiple sclerosis: can we come to a shared, mutual perspective? Will we ever agree on the same values, needs, priorities, and programs? Can you— will you?— ever see through my mind’s eye? Will I ever know your true intentions and hopes for a world free of MS? I cannot currently see through your lens.

Will my own image of multiple sclerosis change? Well, sure. Everything changes and angles slant and rotate. Nothing is ever exactly the same, nor should it be. The knowing is all: I set my lens wide for perspective and deep for understanding.

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MS and Identity

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Joan at A Short in the Cord recently mentioned that she sought the guidance of a life coach through the Multiple Sclerosis Association of America. First of all, I didn’t even know that the hub of this association exists right in my area: Cherry Hill, NJ. Secondly, I didn’t know that anyone associated with MS was available to instruct us on what to do NEXT. I’m presently considering enlisting their aid.

I’ve wrestled with identity problems for the past five years or so, as I stopped working in my fast-paced health career (radiology) and began searching for part-time, low-stress work. I’ve had the advantage of my husband’s income to keep us from having to move in with one of our sets of parents, but in today’s world there are always more and more monthly bills, taxes, and unexpected medical expenses. So the advantage has in no way been an excuse for me to sit back and do nothing. To this day we still need whatever I can contribute (social security payments et al), and then some. I always wonder about stay-at-home moms (or dads) who elect to do this.

The search for my new career— and therefore a big piece of my identity— has been ongoing. What can I realistically do? Will I have to settle for something “just to pay the bills”? In the past (pre-social security days) I did online customer service work to help us stay afloat. But I like the right to the “pursuit of happiness” that lies within our Declaration of Independence. I’m an independent, career-minded girl who wants to pursue something fulfilling and joyful. My quest within the past five years has led me to part-time library work, which has made me so happy and fulfilled that I’ve questioned why I ever became an ultrasound tech in the first place. Like finding the perfect mate: there is a seamless fit. But because of my own long relapses, maintaining the identity of a library staff member has become all but impossible. In the past year I’ve returned to a volunteer status with our library system. It’s much safer, both physically and emotionally. I can live with it because I still identify as one who makes a difference in this public service realm. That’s what’s so great about libraries: there are few boundaries between the ranks.

On the home front I’ve sought writing opportunities, since writing is one of my biggest passions. I’ve identified myself as a part-time freelance writer who specializes in health topics. Seems to encompass my areas of interest and experience. But lately I’ve found myself looking to branch out into other areas of writing because, to be honest, I’m burning the candle at both ends with the health writings: this site and and the MS Life column. I love both, but I don’t want to soley identify myself as an MS writer, much as I don’t want to soley identify myself as an MS patient. So I’m now in active pursuit of non-health writing work. It’ll come; I just need to be more patient.

In my personal life I have a hard time identifying with non-MSers. In my safe little haven I can imagine that I’m normal and can do everything everyone else can, but when I get out into the world with those who don’t think twice about having kids or careers or non-stop days, I am sorely at a loss to identify. Reminds me deeply that I have MS and that I am at home, tenaciously looking for my own purpose. In the same vein, I cannot always identify with other MSers because we are all so different in backgrounds, disease statuses, and present situations. Although I have an easier time relating to this second group of folks. We have the common thread of navigating the frightening neurological unknown.

I haven’t a clue whether I’ll identify myself as a mother, as a successful and fulfilled writer, or as a personally-fulfilled MS patient in the near future. The road is long and winding and all aspects of life are never completely identifiable.

Posted in MS and Emotions, Working/Volunteering Info

Multiple Sclerosis and Guilt

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A few years ago I found that my MS was becoming more of a burden for my loved ones as well as for myself. I was missing out on so many ordinary things: work, family outings, time with friends, holiday get-togethers, and so on. Plans were constantly being modified or cancelled. One of the biggest ramifications was the loss of my driving abilities for eight weeks when I had to rely on family members and friends to get me to my job and take me to run errands. And the loss of a steady income caused my husband and me to accept financial help from others. Tough break and it all weighed heavily on my mind as I tried not to feel guilty about all the trouble my multiple sclerosis was causing in my life. I began therapy around this point and learned a few valuable lessons about guilt. I wrote this article a couple of years ago for Suite101.com, and the information still holds true today:

“Multiple Sclerosis Guilt”

A very real and harrowing side-effect of multiple sclerosis is guilt. Those with the disease feel it for a variety of reasons: they can’t do all the things they once could, plans often have to be cancelled due to the condition’s unpredictability, people don’t understand the “silent” symptoms and consider MSers lazy, and the list goes on. On the flip side, those who are affected by someone with MS harbor their own guilty feelings, often because they feel helpless or punished by the disease’s effects. Reality checks as well as coping strategies can counteract needless bad feelings.

The first form of guilt, something the MS sufferer contends with, can manifest itself for various reasons. People with multiple sclerosis can have a very slight to rapid decline in mobility. Whatever the level, bad feelings can emerge because the patient finds himself or herself less capable than before. Even a small decline reminds a person that he or she might need other people’s help for what seem like simple tasks. A big problem that stems from the unpredictability of this disease is the guilt associated with cancelling plans. It is so hard to keep a normal schedule when MS rears its head whenever it wants. Multiple sclerosis sufferers worry that others “just won’t understand.” Another problem is that silent symptoms, or those only apparent to the sufferer (tingling, heat sensations, pains) can make the person with MS appear lazy because they look fine on the outside. Perhaps the hardest guilt-trip to get over is the question, “Did I do something to cause this disease?” A lot is still unknown about multiple sclerosis, including its definite origins.

Caretakers, family, and friends are no less sabotaged by guilty feelings. They are upset that they cannot do anything to stop MS. Helplessness breeds guilt. It is difficult to watch a loved one deteriorate, even a little bit. While watching this happen, another sort of guilt can set in: family and friends are fine, while the multiple sclerosis sufferer is being attacked by his or her own body. This is much like the emotion felt by a person who is spared in an accident, while someone else is badly injured. Maybe the secret guilt of being angry with an MS sufferer is the hardest to bear: limitations and burdens caused by the latter can breed resentment on the loved one’s part.

Guilt needn’t be an out-of-control emotion. Sometimes a reality check is necessary. Regardless of the levels of disability, both multiple sclerosis sufferers and their loved ones need to realize that this disease is life-altering. There are not always quick fixes and problems are to be expected. People can learn to stop beating themselves up over uncontrollable circumstances: coping strategies for everyone include therapy and/or support groups (both in-person and online) to learn techniques for dealing with MS. A great way to find in-person support is to contact a local hospital. Depending on the level of disability, a person with multiple sclerosis can gain the support of occupational and physical therapists (for better independent functioning), friends and family, and spiritual groups. Family and friends can do the same by accessing caretaker support groups as well as at-home care for their loved ones. As some say, guilt is a wasted emotion, and controlling it is a wise step towards overall better health. Find out more about guilt derived from chronic illness in the article Guilt in Autoimmune Disease by Elaine Moore.

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What Impacts Multiple Sclerosis

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I’m sitting here, glass of red wine in hand, and I’m thinking about how I love to people-watch. I’ve always been one to observe human behavior and what motivates people to act as they do. I can’t help it: I’m pretty intuitive by nature and I just naturally wonder what makes other people tick. Especially when people have MS.
Microsoft.com

Are you an MSer? Are you reading this because someone you know has multiple sclerosis? Do you work with someone who has it? Well, there are many factors that can positively or negatively impact a person who has this illness. I’m talking about stuff above and beyond the usual symptoms, frustrations, and limitations that the disease imposes. Outside things come in and shape an MSer’s reality, view point, and overall experience with MS. We as a population have such varying degrees of the disease that sometimes it’s hard to completely relate to one another, let alone with non-MSers. Throw in outside and unseen stressors and sometimes it is as though we are all from different planets (which of course we aren’t, but sometimes it seems this way.)

As someone within the MS community, I try to analyze a situation with another MSer as something that is incomplete: I don’t have the entire picture of that person and I don’t want to make hasty judgments because I have not walked in that person’s shoes. If you are also an MSer, you can probably relate to the following negative and positive impacts. And if you love someone with MS, this may shed some light on what a person with multiple sclerosis deals with above and beyond their condition and how it impacts them, for better or for worse. Helping to foster positive situations can be a gift to yourself or your loved one.

Of course these lists are not exhaustive….

Negative Impacts

  • Being overworked: Having MS and needing to work because of financial needs can sap the stamina of someone who already has a limited energy supply. The same holds true for an MSer who has too many daily demands. Both situations cause a great deal of stress, fatigue, and worry.
  • Not being in the workforce: On the contrary, being out of work can feel demeaning, depressing, and confusing. Msers face the challenge of making meaning out of a very unstructured, slow existence.
  • Financial problems: MS can be the source of this, but it isn’t always. The loss of a spouse’s job or a new or ongoing financial burden can be weighing heavily on a person with multiple sclerosis.
  • Relationship problems: Not having a partner to help with the stress and decisions of MS can be very taxing. So can having the wrong partner, having family animosity, or having problems with friends.
  • Other health issues: So many MSers have problems on top of their disease. MS isn’t the only illness and dealing with other problems such as depression, migraines, arthritis, other autoimmune disorders, cancer, a heart condition and so on can try a person’s emotional stability.
  • Family health issues: The families of MSers get sick too. Aging parents who need extra care and medical attention, spouses or partners who have their own health issues, and children who have health and/or learning problems can challenge MSers to stay focused and calm.

Positive Impacts

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  • Steady, nonjudgmental love: Having family and friends who love and care for a person with a chronic illness can bolster them and help them to stay positive and less stressed. It motivates them to help themselves and take care of their MS.
  • A safe, quiet place to oneself: Everyone wants to feel calm and sane throughout the day. Having a “room of one’s own” can make someone with MS feel calm, rational, and able to cope with life’s difficulties.
  • Enough money to live on: Having enough income to live modestly but happily can make all the difference between being a stressed and upset multiple sclerosis patient and a calm, grateful one.
  • An occupation or outlet: Everyone needs to feel useful, wanted, and vital. Sometimes with MS this becomes a big problem, as abilities change. MSers need to have something important and worthwhile (yet not overwhelming) to do with their time.
  • Help from others: This includes forms of support from other MSers, counselors, and help from family and friends. An MSer can thrive, even in the face of adversity, with a little help and encouragement. And the reduction of stress can certainly bring about positive change.
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Multiple Sclerosis and Denial/Acceptance

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I have to tell you about my love affair with denial. Having had MS for a bunch of years now, I’ve tackled several ongoing issues that the disease has presented: fatigue, bladder and bowel problems, loss of balance, swallowing like a geriatric, and getting out the old cane for relapses when I walk like Charlie Chaplin. These issues I’ve come to accept with a little anguish and a bit of therapy, and it has been a long journey to acceptance since these symptoms often go into remission and try to convince me that I’m living without MS. I’ve also learned in the past few years that my emotional state with MS is never static: because the disease is so unpredictable, it is never safe for me to assume that I have my emotions completely figured out and that they will remain balanced indefinitely. It has taken me about three years to get the emotional situation to a point where I can accept the unknown and live my life not waiting for the other shoe to drop. Multiple sclerosis has a tendency to do this to people and as the disease progresses and more plans are thwarted, it becomes a bigger challenge to remain emotionally balanced. So I’ve recently learned the benefits of dealing with the emotional ramifications of MS with my divine social worker. I cannot express enough how much she’s kept me balanced and grounded on the continuous, unpredictable path that is MS. Just as MS continues, so does the fight to emotionally deal with it, and the methods are never permanent and can change with the course of the disease.

So here is my most recent lesson about denial, and probably one of the hardest to accept: I am trying to come to terms with the fact that I still need some sort of career to make me satisfied, but I have to let go of a choice that will not meet my needs. Anguish! MSers all know the dilemma of wisely picking and choosing what to do and what not to do. Being in relatively good shape despite my MS, I volunteer at my local library system a few short intervals a week. I love the damned library. I’ve worked there a couple of times in the past, but the multiple sclerosis always seems to get in the way. So now I am again in remission and my denial comes creeping back to me: maybe I can still get that library science degree and be a part-time librarian in a few years. Maybe this time it will be different. But the loads of books are still there, the lengthy walks to help patrons are still there, and the Family Medical Leave Act is still a difficult hurdle. So I have come to a practical, satisfying decision and I’m sticking to it: I love science and I want to continue going to school, so I’m going to take some entry-level psychology courses FOR ME. Not for a possible career, but if I continue taking the classes and a career develops, so be it. I love helping people and my local MS Society doesn’t have enough referrals for licensed professional counselors who deal with the issues of chronic illness (I’ve already inquired.) I don’t know if I will ever counsel anyone— on an hourly basis of course— but I took an intro psychology course a few years ago and loved it, and I’ve already gotten the required statistics class out of the way. One of my life goals is to earn a master’s degree. So who knows? Either way, I walk away fulfilled and with new knowledge that I can apply to everyday life. But I have to confess that the denial still lurks in the back of my mind and this choice is not without its pain.

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Multiple Sclerosis and Apathy

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Being a current couch dweller (a loving term for an MSer who finds herself stuck to her couch), I have a lot of time to ponder why. I’m not clinically depressed, because I was twice in the past and both times it took therapy and medication to pry me off of the couch. I’m also not overly fatigued– I’ve been there and know the huge difference. These said conditions can both be severely debilitating and two of the biggest reasons people with multiple sclerosis end up stuck on the couch.

So then what is going on with me?……Simple: MS apathy. This is my loving term for having MS and no steady occupation. I don’t only mean a job; I also mean basic occupation or what fills up the day. Not too many people out in the work force ever think about this. They usually suffer from the opposite: stress. The same is true for stay-at-home moms and dads.

I’ve suffered from apathy in the past. I think it comes from not having a definite, concrete reason to leave the house. I’ve been volunteering two week days and one week night at the library and I have some writing assignments that are keeping me busy, but I have to say that when I leave the library, I sometimes get a twinge of longing to work outside of the home again. This has been a problem for me in the past few years, so I am coming to terms with finding a new path that is more flexible and won’t make me reneg on work commitments.

So the apathy ebbs and flows, just like MS depression, fatigue, and other symptoms. This is what I’ve learned in the past and the following tricks I’m presently using to get “unstuck”:

Scheduling things that are commitments but not demands

When feeling apathetic and in need of a gentle push out the door, try to plan things to get out of the house. These commitments can be volunteer hours, regular visits with friends or relatives, regular therapist appointments, interesting group meetings, fun classes, and so on. They are things that should be done, to get the body up and moving, but not hard demands that lead to guilt and frustration if cancelled.

Scheduling things during the best hours of operation

Are you a morning person with the most energy during this time? Or do you gain speed later in the day? I myself will turn into a night owl if left to my natural rhythms. My Betaseron shots also tend to give me a “hangover”, with slight to moderate flu-like symptoms until about 11am or so. For this reason, I make most of my commitments after 12pm, unless absolutely necessary. This way I have less of a chance of bailing out and feeling bad about it. I also find doing things in small blocks of time keeps me committed and not overwhelmed.

Finding a comfortable level of outside occupation

This always stymies me. It’s difficult to find a happy medium between overdoing it and being completely underwhelmed. Somehow the housework grows boring and the computer overheats, but venturing out can be scary because MSers as a group do not always know what will be okay and what will be completely draining and overwhelming. Sometimes it’s a matter of trial and error. Finding a stimulating but not overwhelming level of occupation can help control apathy.

This is what I’m currently working on as I try to see (yet again) what is just right for me. I’m not completely apathetic, just slightly bored….

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Keeping the MS Glass Half Full

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I am an optimist. I wasn’t always this way. It’s a learned optimism that has worked to my advantage. MS has tested my mettle so many times: taking away my driving ability, my sanity, my energy, my proper bladder and bowel functionings, my career, and my stubborn pride. Most of these things have been restored, or at least brought back to a functioning level. A couple of things are still pending, but I refuse to let this stupid disease get them.

Because it is unrealistic to think that life’s glass can ever stay completely full at all times, I am satisfied with keeping it half full, as opposed to half empty. Here is what I’ve learned about keeping the MS glass half full:

Be the Tortoise, Not the Hare

I used to rush around, giving little thought to what I was doing hour-by-hour. More interested in the destination, not the journey. I didn’t thoughtfully plan for things that gave me true, lasting happiness. Now that I have more time on my hands (maybe too much some days!), I stop to think about what will make me genuinely happy. Or make someone else happy. True, deep happiness is now high on my priority list. I work slowly towards my dreams— having a freelance writing career that will financially provide for myself and my husband, possibly adopting a child, possibly getting a higher degree in something (I love learning new things.)….I think all of these are possible, but with MS they become true, deliberate gifts through slow, deliberate planning. Bill and I like to compare ourselves to Bill and Karolyn Slowsky, the turtles in those cable commercials. Slow and steady….

Don’t Give Away the Emotional Farm

This might sound greedy and selfish. But it’s not: I selectively choose what to focus my mental and emotional energy on. I cannot possibly listen to everyone’s problems, help everyone with their problems, be everyone’s best friend, and expect everyone to listen to my own problems. It’s just not healthy for anyone. When my friends start in with problems, or I find myself venting, we reciprocally do this for a bit, but then we move on. Unless it is something completely traumatic, we all know that it, too, shall pass. I’ve also gotten rid of foul weather friends— those who only like me when they and I are miserable— because they can be worse than fair weather ones. It’s all a matter of self-preservation. I’m a big fan of survival.

Choose Joy

Sounds crazy, doesn’t it? That someone would choose misery intentionally. However, joy doesn’t happen automatically. It must be sought and cultivated. It must be regularly tended and held in the highest esteem. Even during the darkest hours, when MS wants to steal it all away. Say no. And hold onto it tightly because it is rightfully yours.

Find Something You Love or are Exceptional at and Cultivate It

What comes easily for you? Leading others? Writing prolifically? Are you good with numbers? Is it art? Is it your fabulous golf swing? Do you simply have a gift for conversation? Then as the Nike commercials say, “Just do it!” Find that thing that you were meant to do and BRING IT. It will, in return, provide you with so much joy. There is always something you can do, no matter what your condition. Something that is a gift in you.

Don’t Confuse Optimism with Fantasy

Optimism is not thinking that your MS will go away. It is not thinking that being joyful will take away all your money problems and health concerns. I watch my own limited income come and go in a matter of a week and wish I was working full-time again so that we could just go on a much needed vacation. But I will be satisfied with a weekend trip to Cape May or maybe Atlantic City. I’m so glad we’re able to do this again, after several years of totally struggling. No more fantasies about wealth here!

Be Grateful for the Big and the Small

  1. I’m grateful for having a moderate course of MS, because so many people do not
  2. I’m grateful for my tiny shack of a house, because we didn’t lose it when times were the toughest
  3. I’m grateful for my writing abilities, because they will come to sustain me both mentally and financially
  4. I’m grateful for my wonderful husband, who has been nothing but supportive, both emotionally and financially….because I know that so many folks are travelling along this MS journey without a mate
  5. I’m grateful for the humbling experience of accepting help (both emotional and financial) from family and friends
  6. I’m grateful for social security disability insurance and our modest health insurance, because so many MSers are still trying to get by without either, and this is what’s keeping us from complete poverty
  7. I’m grateful for my cat, who is fat
  8. I’m grateful for the sun that shines through my patio door at the present moment
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What Causes Multiple Sclerosis Depression?

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Google ImagesLike any chronic illness, multiple sclerosis can cause depression. People who never thought they could be down in the dumps find themselves helpless against the despair that illness can bring. Chronic neurological illnesses, including MS, can have frightening symptoms, such as seizures, loss of motor functionings, fluctuating mental capacities, or odd sensory perceptions.

At the same time, studies have shown that depression can come from the disease itself. And what about interferon medications? Do they bring about the blues? With so many factors contributing to depression, it’s a big question whether MS depression specifically comes from the disease itself (organic), from the stress of being chronically ill, or even from one of the disease-modifying medications (situational.) And can the depression stem from a combination of these things?

Organic Depression

Doctors believe that multiple sclerosis depression can be caused by the illness itself. Apparently, inflammation and myelin scarring can form in areas of the brain that control emotions. Just like other symptoms that come and go at whim, depression can strike for no reason— a person may not be experiencing any other symptoms, an acute attack, or traumatic stress in his or her life. Many people with multiple sclerosis experience depression at some point during the disease. Lots of these people battle chronic depression. Chronic depression with MS can be the result of attacks that have caused inflammation and nerve damage, and this depression becomes a chronic symptom, much like tingling or numbness.

Situational Depression

On the other hand, MS depression can be caused by external circumstances that induce it. A primary depression trigger is dealing with the stress and uncertainty of chronic illness. People with multiple sclerosis must handle recurring symptoms such as fatigue, weakness, and/or pain. This interferes with jobs (for those who can work outside the home) and personal lives. Those unable to work outside the home deal with isolation. Then there’s the uncertainty of the future. Will there be more attacks? Will they be more severe? When will they strike? For all of these reasons, multiple sclerosis depression can set in and take hold.

Another situational depression factor is the use of some of the disease-modifying drugs. These include Avonex, Betaseron, and Rebif. All of these drugs are called interferons, and all have the capability of causing depression. The drugs can reduce seretonin levels in the brain, causing the blues. Not everyone experiences this side-effect, so it would be hard to say if a user’s depression definitely came from one of these drugs.

Conclusion

With several factors possibly contributing to depression, the source(s) cannot be 100% determined. Whatever the reason for multiple sclerosis depression, it is real and it can be treated. Whether organic or situational or a combination of the two, it can be helped in order to better cope with chronic illness. Taking the bull by the horns allows for a more fulfilling, happier life, despite having MS.

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Multiple Sclerosis and Avoiding Isolation

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Here are some factors that lead me to my own MS isolation: I have a dread of being out somewhere with no bathroom in sight. I have a trick bladder and bowel, with fluctuating functionings. During remission they are somewhat stable, but not 100% reliable. I’ve had some public close calls, and I’m tired of explaining to unknowing people that I’ve got to go to the bathroom right NOW. I also have some instability with my left leg. During remission I can navigate without a cane, but I am petrified of tripping and falling. I have taken several spills in the past few years, one time seriously banging my elbow on my parents’ concrete porch as I tripped up the small step. I get nervous in new situations where there are a lot of steps or uneven terrain. Finally, if I am having MS lethargy, I want nothing more than to avoid people who might think I just have the flu or a “bug.” I get tired of well-meaning folks asking if I’m okay.

These above-mentioned physical impairments can cause me to hibernate in the house. Luckily, if I can muster up the chutzpah to try new things and go to uncharted places, I’m usually rewarded with new energy, good memories, and new esteem.

Here are some ideas for broadening your MS world and widening your community circle. There are ideas for all levels of ability:

Try an MS organization’s activities

If you are within a reasonable distance of an MS organizational chapter (wherever you live in the world), investigate planned activities with other MSers. Check out local events online or in current newsletters. If you are physically able, try to volunteer for a fundraiser, where you will meet other people with multiple sclerosis who want to help the cause. The great thing about MS societies is that no one questions your level of ability. There is no need for explanation.

Speak with a counselor about coping techniques

Oddly, many people with MS avoid contact with the outside world, but they don’t realize they can seek help for their fears. There are various types of counselors who work with people with chronic conditions. They can help people with multiple sclerosis come to terms with their fears and help them to venture out and free themselves from the self-destructive nature of isolation.

Find an MS support group

If you are not geographically near an MS organizational chapter, you might want to investigate local multiple sclerosis support groups. They can be found online by doing Google or other search engine queries, or you can find them through local hospitals or rehabilitation centers. These are great resources for MSers because trained social workers can provide plenty of information. Often the hospitals themselves have ongoing meetings.

Find support, camaraderie, and information online

Despite your physical condition, you can find lots of support online. There are message boards, websites, blogs, chat rooms, and other ways to keep connected with others. A good source for message boards and chats is MSWorld.org. Another recent discovery (learned through a fellow MSer) is the website MS Friends, where there is a 24-hour peer support line for immediate need. There are also resources and current MS news items. A fairly new MS chat room, hosted by a great blogger and neighbor (from Delaware) can be found at Joan’s blog “A Short in the Cord.” She welcomes all new chatters from anywhere around the globe. And she’s extremely nice! Last but not least, check out the MS Carnival of Bloggers for many many links to bloggers who understand. If you start your own blog, you can submit a blog post to this bi-weekly consortium of MSers. Just contact Lisa, the ringmaster. There are also several blogs that I personally read, listed to the right in the “Blogroll.”

Give credit where credit is due

Venturing out and facing the unknown or making contact with others in the same situation can be frightening. Pat yourself on the back for taking the first step.

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Multiple Sclerosis and Isolation

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Isolation, Microsoft.com

Having a chronic illness like MS can be difficult enough, but add to it the tendency to isolate oneself from others, and the burden can become overwhelming. There are various reasons for isolating behavior:

Shame stemming from physical impairments

This affects patients in different ways, depending on levels of outward disabilities. MS patients who can pass as “healthy” people may become panicky about being around others who do not know about their disease. Disclosure is not as necessary until an MSer who looks fine proves otherwise. Vague abnormalities may give someone away: a limp, an unsteady gait, muscle twitches, excessive bathroom usage, sudden exhaustion, and so on. Those with greater outward disabilities have their own issues of being strong in the face of public ignorance and dismissal. Living with these questionable imperfections can take a toll on a person who is tired of explaining multiple sclerosis to others. Sometimes avoiding others outside of an immediate circle is easier.

Not feeling understood by the general population

Let’s face it: MS is weird, sometimes frightening, messy, and not well-understood by most people. I didn’t know much about it myself until I contracted it. People with multiple sclerosis need to feel understood for their limitations, outward symptoms, hidden illness, and their tendency towards anxiety and depression. Family and close friends can often be counted on to be understanding, but what about the rest of the world? The grocery store clerk doesn’t know why Mary is so slow taking her change when the line behind her is piling up. Office mates might not understand that when Jim needs to go to the bathroom, it’s often an emergency. How do people with multiple sclerosis deal with these unknowing folks? Holing up and avoiding others can be a solution.

Lack of MS resources, community activities, and Society support

Not everyone lives near a local MS Society chapter and can get involved with planned activities, use resources, or meet others with multiple sclerosis. Physical isolation is more common than people think. In my state there are 3 MS society chapters, all in the central and northern regions. The southern region, which accounts for 1/3 of the state, has no representation. I live about 35 minutes from my closest chapter, but I wonder what other MS patients down in south Jersey do to feel connected to the multiple sclerosis community?

Physical isolation due to disability

The reasons for this can be various: physical inability to leave the home (unaided), public places that are not wheelchair- or scooter-accessible, lack of a social network due to being out of the workforce or living away from family and friends, moderate to severe fatigue, debilitating depression, and so on. This can be the most heartbreaking cause for MS isolation. Multiple sclerosis can physically flatten a person and make it extremely difficult to get out. The social isolation stems from being at home and not having a good support network. And depression can physically flatten just as surely as any other MS symptom.

****My next MS article, “Multiple Sclerosis and Avoiding Isolation”, will discuss ideas for widening the community circle. In the meantime, find more MS articles, information, and stories in the “Categories” and “Blogroll” to the right.

Posted in MS and Emotions
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