Identity

I

MS and identity. We know what MS does to us physically – but what about to our self?

Receiving a diagnosis of multiple sclerosis is devastating. Full stop.

The disease course is varied and unpredictable – and we humans we don’t like uncertainty. There is no cure; medical treatment is limited and the symptoms are wide and diverse. In addition, the onset of MS often occurs in young adulthood when people are not prepared for physical limitations and disability.

Then there is the profound impact that MS has on our sense of identity. Without warning or choice, we are forced to undergo a transformation of our self. Taken-for-granted values and beliefs are shaken; positive self-concepts are replaced by negative ones and we find ourselves estranged from our physical body.

It is this disconnect which has interested thinkers for centuries. Two thousand years ago, the philosopher Epictetus wrote: “For what is it to be ill? Is it that you are near the severance of the soul and the body?”

More recently the sociologist Michael Bury described chronic illness as a “biographical disruption” while the philosopher S Kay Toombs – who has had MS for 45 years – views it as a series of losses: “the loss of wholeness, loss of certainty, loss of control, loss of freedom to act and the loss of the familiar world.”

To illustrate her last point she writes: “the bookcase outside my bedroom was once intended by my body as a ‘repository for books’; then as ‘that which is to be grasped for support on the way to the bathroom’, and is now intended as ‘an obstacle to get around with my wheelchair.’” (The Lived Experience of Disability).

Not surprisingly, people with MS have high rates of depression and anxiety. We also are – and it pains me to write this – nearly twice as likely as the general population to commit suicide (see Prof Giovannoni’s recent post: https://multiple-sclerosis-research.org/2019/06/unassisted/).

And yet… some people with MS manage to adapt and even thrive despite all the disease takes from them. Somehow they find new meaning in their life, forge new identities and preserve a sense of self. The biographical disruption heals. 

So how does this happen?

The key appears to be acceptance of the disease – followed by the process of adapting or, as sociologist Kathy Charmaz defines it: “altering life and self to accommodate physical losses and reunify body and self accordingly.” 

Charmaz says this happens in three stages. First, by experiencing and defining impairment; then by making bodily assessments and identifying trade-offs and finally – by relinquishing control over the illness and flowing with the experience of it. She also writes that adaption doesn’t happen just once, but continually due to the episodic nature of MS. 

Many with MS find their family plays a key role in supporting this identity reconstruction; others draw on previously established social groups – such as those linked to family, work, community, sport or religion – for help. While some derive much benefit linking up with MS support groups and communities.

Take Robby Khullar, 49, who was diagnosed with MS when he was 19. For the first 16 years post-diagnosis, his disease-course was seemingly benign. He had his own business which he loved and cycled everywhere. Then came a series of relapses – which left him with cognitive issues and dependent on a wheelchair. He was forced to sell his shop. His life became “empty,” he says. 

Fast forward fifteen years. Now he seems so resolutely upbeat. How? “MS forced my hand. It made me realise what is important in life. It also made me think about how I wanted to lead a good and meaningful life.” 

These days he spends his time volunteering for Shift.ms – the social network for people with MS – and the Samaritans, the suicide-prevention charity. “Volunteering makes me feel useful – not useless. If I didn’t have that, I would have nothing.” He also emphasises the positive. He is still living independently; he has supportive friends and he considers himself fortunate compared to some people in the world.

Natalie Kanji, 37, is even more emphatic about how MS has changed her life for the better. “MS is the best thing that ever happened to me,” she says about the disease she’s had for two decades. Five years ago, she felt very differently. She was severely depressed after a major relapse forced her to leave her career. Friends drifted away. Walking became difficult.

In response, she “totally shut myself up” and started to think about who she wanted to be. “For many years, I didn’t know who I was. I wasn’t being honest. I always opted for the safe zone. Now I do what I want,” she says. “I love my life. I understand myself.” 

For Toombs, it is these stories of healing that we should pay attention to. For too long in Western society, she says, a person’s worth has been judged on their ‘doing’ – how much they produce or their professional status – as opposed to their ‘being.’ As a consequence when people with a chronic disease find they can no longer ‘do’- their sense of self-worth plummets. 

This is not helpful, Toombs says. She points to herself in her wheelchair. “I would score high on the Kurtzke Disability Scale meaning I have serious disability…  but this does not correlate to my personal wholeness and meaning which I consider much more important.”

The answer, she says, is to promote healing. This, she defines, as restoring and preserving personal integrity and wholeness even in the face of an incurable illness. “You can be cured and not healed, and you can be healed and not cured.”

By Rachel Horne

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Rachel Horne

38 comments

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  • All of this sounds horribly familiar. At some point after diagnosis comes acceptance, this did not happen for me until medical retirement. I am still the same person but I now do very different things from pre-retirement you straight a copy you you you you spec you era which I now find fulfilling. I think my secret has been to identify transferable skills as well as being very positive.
    I think this post could apply to so many other Long Term Conditions. MS is a totally different LTC, learning to live with it is difficult and the goal posts are always moving down the valley.

      • Kathy Charmaz describes me to a “t.” I’ve lived with MS for 39 years. I’ve adapted, I’ve modified and I’ve gone with the flow. Unless you have an objection, I’m going to take the liberty of quoting some of your excellent post (and link to it) in the column that I write for the MS News Today website.

        Oh, Dr. G. As a retired journalist I agree with you. How do I go about guest posting here and is the site open to material that I’ve published elsewhere?

  • Receiving a diagnosis of multiple sclerosis is devastating. Full stop………. WELL SAID Rachel!!

    In the early stages people look at you as if you are mad when you say you have it….if only they knew how hard it is to cope emotionally with such a diagnosis….

    • The “Full stop” resonated with me, and “devasted[ing]” explains in one word EXACTLY how I felt when I was diagnosed. Probably, like most of the readers here, I didn’t wake up the next morning and keep going. My life was at a full stop. It took a few years before I realized that I could truly be happy again. And then a few more years for me to realize that the inner angry woman hiding behind my fake smile was truly what was disabling me. Thank you for sharing your experience. I’ve learned from it, and hope others will too.

      • Thank you for all your kind comments.
        I didn’t have the space to write about how pwMS adapt/cope – when they make the choice to hide having MS from co-workers and their friends (for various reasons). Do they find it stressful to lead a double life? What happens when/if their symptoms move from invisible to visible?
        Rachel
        PS – Sorry for the huge photo of me – that was not intentional!

  • Great article Rachel, thank you!

    I spent the first 15 or 20 years post diagnosis pretending my MS did not exist, it was an embarrassment that I somehow felt ashamed of and that I had to keep hiding from others – friends, coworkers, bosses. I did not want to be seen as “different” and incapable. After two children and a busy career and divorce I met a partner who I was afraid would disappear once I told him I had the dreaded MS. I recall an early dinner date wobbling around in my totally inappropriate but most beloved pumps trying to seem like I was normal. Somehow soon after when I brought myself to do the “big reveal” he was amazing and has been my biggest and staunchest supporter ever since (12 years already). I have at last come to grips with who I am and what I can do and what I cannot. He encouraged me to change to part time work from full time. That was for five years. Last year I retired completely. Life is good. Never better. I am healed.

  • What a wonderful post. Today’s society places value on all the wrong things. Friends, family, and self-worth are the truly important things. It’s really a shame that many people only realise this after a life changing diagnosis or event.

    Although many people find the following morbid, I believe that being mindful of death (memento mori) helps keep things in perspective. Everyone is going to die, some sooner than others. So, how are you going to spend your emotional currency? Worrying about the size of your house or that promotion, or living life and spending time doing what brings you joy. There is always something people can do that brings them and others joy irrespective of whatever barraged they face. Focus on that and happiness will follow.

  • The disease is as much a part of me as my hand; I cannot hate it, it is me and I am it. I haven’t found peace, exactly, but I cannot truly live if I am at war with myself, so I take my meds (currently alemtuzumab), I use my treadmill, I read books with ridiculously bright lights (thanks, ON), and eat more broccoli than ice cream most days.

    Two other members of my family have MS. One is extremely bitter. It was a terrible gift to speak with him in the early days of diagnosis. I cannot fault his feelings, but it also showed me a mental road to not follow. Yes, I get angry, yes I get sad, but I can’t live in a negative head space much of the time. I have to many other things to do.

  • Kathy Charmaz describes me to a “t.” I’ve lived with MS for 39 years. I’ve adapted, I’ve modified and I’ve gone with the flow. Unless you have an objection, I’m going to take the liberty of quoting some of your excellent post (and link to it) in the column that I write for the MS News Today website.

    • Thank you for your kind words.
      Please go ahead and quote it in your column – of which I am a fan.
      I, too, try and go with the flow but sometimes it doesn’t go as smoothly as I would have hoped!

  • Terrific essay.

    As with all things ms, it seems the sense of self component of the disease can be wildly different from patient to patient. Even within the course of one patient’s disease, “who am I” can have very different answers.

    As a patient with progressive disease I find acceptance a hard commodity to come by. I can accept the losses already suffered, but there are always more to come. At times, peering into the future seems like staring at the dark at the end of the tunnel.

    When I first went on disability leave, my life actually blossomed. Interests and talents that had gone dormant due to neglect suddenly sprang back to life. With a camera mounted to my wheelchair, I rekindled my love affair with photography and continued my professional interest in video. I started a blog that found success beyond my wildest dreams, and discovered my inner scientist, devouring medical research like it was mana from heaven.

    Now, though, with my disabilities mounting and thieving the dexterity needed to pursue my relatively newfound passions, I find myself stuck once again, in the middle of the relentless storm of extracurricular physical problems – UTIs, other infections, and other maladies – on top of the usual MS progression. The blog has been left untended for about a year now.

    Time for some redefinition of self, and to shake off an extremely heavy bout of inertia. As soon as I’m feeling up to it, he says through the haze…

    • Thanks for your praise.
      I have been a huge fan of yours ever since I was diagnosed nearly a decade ago. In your blog, you write the things I wish I could write – but somehow you make it even better (if that makes sense).
      Would love to see you return to your blog – but can understand the weight of the inertia.

      • I appreciate the kind words about my blog, thank you. Giving me some much needed motivation to get back to it. First I must break the gravitational pull of Netflix…

  • I have had two lives – one prior to MS (thankfully some 40 years) and one after MS (some 15 years). I’m grateful for the first life and would take it back in an instant. MS has shown me how great my first life was – but I knew that at the time. I don’t really grieve for my old life as I know it is gone. I deal with my MS life as best I can. My general approach (which has worked for me) is to deal with it internally. I never discuss my disease with my wife or children. I never told work colleagues (apart from those who were close friends). I don’t get involved in fora, MS societies, support groups, fund raisin etc. I visit this site to keep updated on research advances. MS has had an impact on my life but I have kept the impact small (mostly thanks to Alemtuzumab and exercise). I bumped into an old university friend and we decided to get a coffee. My knee gets stiff after 20 mins and he asked what was wrong with my leg and I said “old rugby injury playing up”. We ended up having a long lunch and reminiscing and at the end he said that I hadn’t changed a bit (hadn’t seen him for 25 years). This pleased me. A former colleague who got MS around the same time as me is always keen to meet up but then only wants to talk about MS. I limit these meet ups. I have kept my identity by keeping MS small and dealing with the emotions internally. It goes against the let’s talk, let all out, find a counsellor approach which many MS experts encourage, but it works for me as I’m a privAte, no fuss sort of person.

    • Really interesting reading this. I think it highlights how we are all so unique and how we all cope differently with fundamental change. As you said, your strategy goes against the current “talk it all out” – but if it works for you – that is great. Thanks for posting this.

  • Thanks Rachael for a post that has engendered such heartfelt responses concerning individuals attitudes towards having and living with MS.

    What is particularly striking is the variety of coping strategies used – one approach doesn’t universally apply, but the validity of looking to live well with this disease, as far as possible, does!

    WK reply speaks eloquently about the losses acquired and those to come. Whereas this obviously applies to critical, significant changes, such as loss of limb function, it also applies at a micro level. For myself one of the biggest challenges is managing the change from being in a good phase, to pain and fatigue impacting on my daily life and with no rhythm or reason to the shift from one state to another! The upside is adopting a take a pause and readjust. I find this adds some additional sense of being in control. My husband and I agreed on Sunday that if I express doubt about my capacity to do something, as I had done on Saturday, that we will err on the side of caution and cancel. For each of us and our relationship, the risk of dealing with frustration if I prove to be ok is better than the fallout of cancelling on the day itself. In this case cancelling taking his 81 year old mother out for lunch.

    Another challenge can be constantly learning how MS manifests. Mrs Thinks-she-now-knows-a-reasonable-amount-about-MS recently went to see the musical On You Feet, totally unaware that GE’s father had MS and that this is portrayed as him in a wheelchair with severe hand and head trembling. My husband asks me about why did they show him like that. Google it later to learn it’s a common symptom😳 How did I not know this?! Something else to add to the list! It has shaken me, and along side the current dose of fatigue and pain, means my spirits are a bit lower. What the love and support of family and friends has provided is an endorsement of my taking it easier and not getting hung up that somehow I’m failing. I’ve focussed instead on connecting with this ‘quiet time’ and anticipating (hoping for) the return of a more energetic and capable me.

    Oh, and it’s a beautiful day here! 🙂

    • Thanks for sharing this. I, too, never knew hand and head shaking was a common MS symptom! Thought it would have been Parkinson’s disease.
      And I do know about feeling bad – if I have to cancel something or if I take a lot longer to do something I previously did effortlessly. We must learn to be kinder to ourselves…
      Take care.

  • Feb 1997 I lay in my tomb of skin and bone totally paralysed, with no voice, on my bathroom floor. Unable to breath at all I concentrated on suppressing the automatic breathing reflex as I didn’t want my last moment to be one of panic borne from fighting suffocation. If you cover your nose and mouth and try to breath in that’s what it felt like. It can be done, I gained control and resisted trying to breath, feeling calm my last thought was of love for my 5 week old baby as I lost consciousness. This is anaphylactic shock.
    Another episode involving paralysis happened at 2am, I couldn’t call for help. Laying on the floor unable to move anything I waited for my airway to close.
    I woke up hours later, shocked that I was alive. I looked up at the blue sky and down at the sunlight shining on my garden as if I were seeing these incredible sights for the first time. I still see the sky this way every day and never forgetting how lucky I am to be here with my children.
    Subsequent episodes have been swiftly halted by my beloved Epipens that are always with me.
    I say all this because people are surprised that I am not in a state of panic or devastation over having ms. I am aware of what it can do but I take one day at a time and do what I can with what I have and am grateful for it. I have visited the point of ‘severance of the soul from the body’ a few times leaving me stuck in a state of awe that I am here at all. I used to curse anaphylaxis, I am allergic to alcoholic drinks for one thing, but it has taught me to appreciate being here, even with the pain and uncertainty of ms.

  • Hahahaha
    As someone living in “resource-poor” country (no social security nor decent medical help unless you got cash) I could say ms completely destroyed my career, identity, my life and made me a man without future.
    Just imagine how would you find yourself volunteering for anything being disabled on a $200 pension in anti-borderless environment (that is, no chances even to get out of your house as you enter wheelchair stage).
    First world problems as is.
    Hahahah just hope death will set me free and next time I’ll reincarnate in the God blessed Britain

  • What a great article, Rachel. I have long been interested in the effect of MS on our (and my own!)sense of identity & how we cope in often very different ways. This interest prompted me to conduct qualitative research for my MSc on a self selecting cohort of single women who considered themselves to be living flourishing lives with MS. This was not a ‘happy clappy’ exhortation of positivity but an exploration of how they reached this point and explored how their sense of identity was affected. My research won a research award from the MS Trust & was published by them 4 years ago. Unfortunately, after this I was (ironically enough!) laid very low after a series of relapses so did not really capitalise on this. Reading your article has inspired me to look at this again to do some further writing & hopefully some further research., so thank you so much for that!
    I would, of course, be very happy to post the article published to this blog if that is appropriate (already publshed by MS Trust).
    Again, Rachel, many thanks gor this thought provoking article.

    • Thanks so much Jane for your words.
      I would love to read your article. Can you please post the link?
      Sorry to hear about your relapses, and hope you are doing better now.
      R

  • I enjoyed your blog it is right on the money . I am a very lucky one since I did not get MS until I was 65 therefore I got to do so many things in my life and have wonderful memories! I have Progress MS which I fine very hard to deal with! I look to God for my strength and guidance. Each day is a gift from God!

  • I enjoyed your blog it is right on the money . I am a very lucky one since I did not get MS until I was 65 therefore I got to do so many things in my life and have wonderful memories! I have Progress MS which I fine very hard to deal with! I look to God for my strength and guidance. Each day is a gift from God!

    • Your post resonated with me – spot on comment.
      I was 43 when I was diagnosed – can not imagine how tough it would be to receive the news when I was in my teens or early 20’s. S

  • I have lived with a diagnosis of secondary progressive multiple sclerosis for seven years. I’m a 72-year-old male with a late age diagnosis of MS.

    This is one of the best articles that I have read about multiple sclerosis in a long time. It has reassured me and I feel that I’m on the right track.

    • Many thanks for your kind comment. The article in some ways was a tough one to write – as all of us have such very different experiences of MS. I know my reaction to a diagnosis at 43 – would be very different from yours at 65. Yesterday I spoke to someone who had been told she had MS at 17. Now that one would be really tough for me… but she is thriving and embraces life to the fullest. It always amazes me how some people cope with adversity.

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