MS Survivor’s Guilt – Is That Even A Thing?

guiltIt’s bad enough being made to feel guilty by some fellow-MS’ers, now I’ve had Alemtuzumab treatment.

‘You’re lucky.’

‘You don’t know what I’ve gone through.’

‘Are you sure you have MS?’

Before this treatment, I was a wreck – relapse after relapse was destroying my body – I barely had time to breathe before the next onslaught.

The treatment is brutal but effective; it’s held off the endless relapses and hopefully I will manage to see The Teenager off to University – my main aim.

My detractors forget something.

Not only do I feel ‘bad’ that I’ve been deemed eligible for a treatment not everyone can access, but I also live in the shadow of so-called survivor’s guilt.

My dad died from his MS complications, way back in 1978. His birthday would have been today. He was 35 when he died.

When MS first appeared when I was 37, I’m not ashamed to say I panicked. I fell down a deep well of despair. I went in to denial. This could not be happening to me. There was no way it could happen. Could history really repeat itself?

Well, it seems it could. I was diagnosed four years ago this May and as my MS was highly-active and rapidly-evolving, I took the step of taking Alemtuzumab treatment. I have now had three courses over the last four years. The relapses still appear, there’s just fewer of them.

As I was hooked up with a cannula, having steroids first, then a flush, then the treatment, I lay back and thought about how lucky I was. Not to have MS, but to have the treatment options.

So, today, on my dad’s birthday, I will mourn everything he missed out on due to this disease. The unfairness of it takes my breath away. I miss him.

And if I have elected to undergo a horrible treatment three times to make sure I can give The Teenager experiences I never had, I will.

Why wouldn’t I?

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16 thoughts on “MS Survivor’s Guilt – Is That Even A Thing?

  1. Jenny says:

    What bitter sweet emotions you must go through when looking at the effect MS has had in your family’s life. And yes, I also am grateful for the treatments I can have that keep me.strong for my kids. And having nursed people in the past with Ms I do count my blessings x

    • stumbling in flats says:

      Know exactly what you mean about counting blessings – not a single day goes past that I don’t remind myself of all that is good in my life and how lucky I am to have had this treatment.

  2. Judy Epstein says:

    This brings tears to my eyes. You’re a blessed daughter to a very brave father when there were NO ms medicines. And such a courageous mother to go through the necessary treatments to be there totally for her Teenager. Blessings to you all!

    • stumbling in flats says:

      Thank you so much! Without the treatment I had, I dread to think how mine and The Teenager’s lives would have turned out 🙁

  3. Kirsty says:

    Big hug. Miss my dad too. Always right to fight to see kids grow.
    Keep strong. Xx

  4. Rachel says:

    Exactly why shouldn’t you. This is a horrible unpredictable disease. I’m not on any medication at all but I am well aware how things can change in a blink of an eye. Given yr unfortunate family history take whatever treatment they offer you. Don’t ever feel guilty for trying something to hopefully lead to fewer relapses wishing you lots of luck and long may fewer relapses continue for us all. We need a cure asap lol xx

    • stumbling in flats says:

      We definitely do – so no one else has to go through this 🙁 And also more help for peeps already living with it!
      It’s really the unpredictable nature of it that gets me every time, lol.

  5. never feel bad or guilty for doing something to help you and your family live as normal life as possible. you have the choice to do that now, treatment for MS isn’t the best, but it is better than F all. and it drives me insane when people start belittling someone who has the chance at treatments and how MS can effect others. drives me nuts because people with the disease should be bloody aware its different for everyone

    it is very unfair it has taken this long to even find some kind of treatment for MS :/ so many people didnt get the chance at help, so I think that now, we should take what ever we can to get the help. and find the people that say mean thing like what you said, are jealous sadly, also angry they can’t get the same treatment for what ever reasons, but it does sadly have a lot to do with jealousy :/

    (sorry for the small rant, in pain from a relapse/flare up (what ever they decide to call it this time), so in the mood to yell at something :p) not you tho, the idiots that say mean things 🙂

    • stumbling in flats says:

      Thank you for your lovely, supportive comment!
      Am so sorry to hear that you’re in the middle of a relapse and really hope it passes soon. Bloody MS.
      I find the whole postcode lottery unfair but it’s also that some MS responds to treatment better than others, if that makes sense. I also have a couple of friends with MS who lead relatively normal lives and are on no treatment at all, yet I’m happy for them, not jealous!

      • exactly, be happy that the disease is letting people live as normally as possible. the post code lottery does suck and needs to change, not sure if it ever will tho sadly due too all the different budget cuts in different places 🙁

        • stumbling in flats says:

          Very true, and it really does suck. But hopefully pressure from us and the healthcare professionals will change that, along with the NICE guidelines. Eventually 🙂

  6. Michael Johnson says:

    Oh wow, that has actually moved me. I lost my younger brother to a brain tumour in 2004, he was 23. Lived life more than anyone I knew.

    It sounds silly but was relieved my diagnoses was MS and not a tumour, couldn’t put family through that again.

    The Sun is setting, listening to Cinematic Orchestra’s “To Build a Home” and this post has inspired me to do the things Adam would’ve done.

    Sun still setting and I have a new smile.

    • stumbling in flats says:

      Hi there,
      So sorry to hear about your brother. How awful for you and your family.
      I know what you mean about the ‘relief of an MS diagnosis. I do know how ‘lucky’ I am it’s perhaps not the worst that could happen (although of course for a lot of people, it is).
      You take care and good luck with all you are planning!

  7. Marie Heron says:

    Barbara. You are a treasure. I cant imagine what life looked like for you and looking through the lens of your diagnosis is min-boggling. I too understand survivors guilt. I am now 59. I have been living with M.S. for 35 years. I am still mobile, although I am stiffer now. Why did I get to have an M.S. that has left no visible scars. Like you, I recognize this as a gift and I am committed to keep supporting people living with M.S. for as long as I can. I love you and what you do. Marie

    • stumbling in flats says:

      You are an angel, Marie. So lovely that you’re a Scottish exile!

      I feel awkward whenever I think of my Dad and all the treatment I have had and I can only wish he had the same. It kills me.

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