Learning to Live with Chronic Illness.

In the early years of my illness, I searched desperately for a cure. After diagnosis, I was told by a doctor (who knew less about my illness than the little that I did) that I could expect to recover within a year. Even a year seemed too long to wait for me to get my life back, when I’d been ill two years already before receiving a diagnosis. My GP was much more realistic about my prognosis, telling me it could take years to recover even if I should prove to be one of the lucky few that go on to achieve complete remission. Refusing to accept a prognosis I didn’t want to hear I decided I’d never settle for anything less than total recovery.

Whenever doctors suggested a treatment, I’d agree without hesitation and with no thought for the potential downsides. Why would doctors recommend a treatment that wasn’t bound to work for me? So I took anti-depressants, though I didn’t have depression, and then neurovascular drugs, physiotherapy, graded exercise and cognitive treatments to name but a few of them.

When each of these failed to work (or only made me sicker) I invested all my energy in searching for medical trials, alternative therapies or experimental treatments, often with only anecdotal evidence of their efficacy.

Unwilling to leave any stone unturned in my bid to return to a ‘normal’ life I tried acupuncture, massage, affirmations, raw veganism, mindfulness and visualisation and while they may have helped alleviate the emotional impact of living with chronic illness, they all fell short of providing the cure I was looking for.

After five years of illness, I looked back and realised, not only had recovery remained elusive, I had little else to show for the fifth of my life that I’d been searching for it. I didn’t want to look back in another five years and realise my search for better health had stopped me from living in the meantime, so I decided it was time to stop actively seeking a cure and focus on living life to the best of my abilities instead.

Some people see this choice as giving up, but I call it realism. Without the rigours of hospital visits or side-effects of medications to contend with, my health and quality of life have actually started to improve. Without expensive diets and supplements, my bank balance is healthier too meaning I can afford small treats and hobbies that make tough days just a little bit brighter.

This doesn’t mean I don’t have hope of improved health in the future. It doesn’t mean I won’t consider future treatments my doctor might recommend to me, but I’ll no longer spend all my limited energy, searching for possible treatments while neglecting other aspects of living. I focus instead on making each day of my life, the best day it can be, secure in the knowledge that if a sure-fire cure existed, I’d already have found it, and if one should be developed, the acclaim will be unmissable.

Accepting my illness may always be with me has been a difficult, and ongoing, process; one that many with chronic illnesses must go through, though each in their own individual way. Acceptance is a journey rather than an event and individuals must be supported to do whatever they need to do to come to terms with the probability that life will never be for them as they may once have imagined.

Some make peace with their illness quickly; others may always be looking for the next new promise of recovery. Each must learn to live with their illness in their own individual way.

In learning to live with chronic illness I have had to redefine so many of my values. In society’s eyes, our value lies in what we earn or continue to achieve but when illness leaves you unable to work, and dependant on others, past qualifications and achievements are of very little worth to you. I have had to learn that my intrinsic value exists independent of anything I am able (or unable) to achieve.

So I’m learning to take pride in the small but costly achievements of everyday life, which mean more now than ‘greater’ but less-hard-won achievements of the past.

I’m learning to value the few precious friendships I have less, rather than feel bitter for the many former friendships I have lost.

I am learning to overcome the guilt and shame I feel at needing others to support me both practically and financially instead of being able to manage on my own.

I imagine I’ll always feel some grief for the things I’ve lost or can only dream of, but even if recovery should continue to elude me, I am determined my life will still be worth living.

I choose to live the happiest life I can despite my limitations.

This may not be the life I dreamed of, or the life I would have chosen but which of us (healthy or otherwise) gets everything in life we ever could have hoped for?

The truth is no matter how sick or well I am, there will always be something more I will strive for; something that would make my life so much better if only I could grasp it.

If my happiness depends on attaining what I do not yet have I will never be truly happy, because there will always be something I don’t have or haven’t done yet.

If I can’t learn to be happy right where I am, then even a cure will ever be enough for me. I’m learning to be content with what I have already and though I’ll never abandon hope of a healthier future, I’ll not pin all my happiness on it either.

Some may call that defeatism. I call it living.



This entry was posted in Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to Learning to Live with Chronic Illness.

  1. quiall says:

    You have learned a valuable lesson some never learn. I call that success..

  2. Great post. I too like you am now living with this illness and like you hope one day to be better, but I no longer view it as a weakness, simply a way of life, my life. Living takes many forms, but only you can define your life, only you can live it as you. After all, it’s you who has to face the mirror as you, no one else can. As for others thoughts as to how you live, their expectations, their definitions, they are theirs… nothing to do with you!

  3. Thank you for writing such a thoughtful and helpful post. I am in the process now of learning what my new “100%” is, and how to achieve a consistent level of functionality (as much as possible). Understanding what your limits actually are is very hard, never mind trying to live within them. You found a system that improved your quality of life, and that is golden.

    • I agree that learning to find and live within your limits is incredibly hard and something I still wrestle with daily. I think there will always be times when (whether by choice or necessity) I go over my limits and suffer the consequences. On the plus side I have found that living within my limits as much as possible has helped those limits to slowly improve. I hope it is the same for you too. Good luck in finding your new ‘normal’.

  4. lennae87 says:

    Thank you for sharing, living with a chronic illness is a major learning experience. It so important to embrace all those small achievements. I have ME/CFS and although I am unable to work or drive and I rely on others to take me out, I try to see the positive in each day.

  5. megrumble says:

    A well written post that should be useful during the times that I don’t pursue something and worry about giving up.

    • Thank you. I see absolutely no harm in pursuing reasonable treatments if they present themselves over time and would never tell someone not to go ahead with trying anything that might help them improve but it’s ok to just get on with life in between treatments. Don’t ever feel guilty during times when you are not actively seeking a cure. Life is for living, and getting on with life without any active treatment because nothing worth trying is currently available to you isn’t the same as giving up.

  6. Stephanie says:

    I like your post. When I decided to accept my illness, it felt liberating. Others told me they felt I was giving up. Like you, I will consider reasonable treatments but I am not going to live my life chasing something that isn’t there. I have found doctors who work with me at managing my illness. That works better for me than chasing doctors who MIGHT have a cure. Thanks for your post.

    • ‘Liberating’ is a very good word to describe the decision to stop actively pursuing a cure and get on with living. I felt like a failure for so many years when people were constantly recomending various ‘cures’ and I heard countless stories of people who’d been helped by them, but despite my best efforts, nothing seemed to be working for me. My quality of life has been so much better since I accepted my illness may be lifelong. I’m glad that you found the same.

  7. ppoole04 says:

    I have had a very recent diagnosis, and still trying to come to terms with having a chronic illness. At the moment I feel very bitter, and I know I’ve been in denial. It’s hard lying in bed day after day when previously have been so active, but thank you so much for posting, lots of good advice. X

    • I’m sorry to hear you’ve been diagnosed with chronic illness and are struggling to come to terms with it. The adjustment process can be hard and long and I’m sure nothing I could say will make it easier for you right now. It takes time to adjust your expectations of life and learn to accept unwanted limitations but life does get better when you eventually come to terms with what you are going through. Sending you my very best wishes and gentle hugs xx

  8. bertieandme says:

    Great post which really resontes with me. Took me 6 years to stop trying to fight or cure my illnesses and learn to live the best life I can despite them x

    • I’m glad you’re finding ways to live life within the limits of your illness. It can be a long process to accept your illness may not have a cure but many people I have spoken to say life improved dramatically when they stopped using all their energy trying to search for one. That certainly was the case for me.

  9. Miss P says:

    I have ME/CFS & I was pretty much consumed with trying to recover & spent lots of money on anything & everything that might have offered some hope. I now pretty much accept my illness & live my life within it’s constraints – I’m riding the wave!
    I recently bought Dr Myhill’s book “It’s Not Hypochondria, It’s Mitochondria”. I’ve only read a few pages so far..

    • I’m glad you’ve been able to accept your illness and start to reclaim some quality of life. I haven’t read Dr Myhill’s book but from what I’ve read of Mitochondrial theories about ME they certainly seem to make a lot of sense. I hope you find it helpful.

  10. The first four paragraphs are my story too. Things are changing in my life so I hope to be more accepting soon 🙂 Good post, thank you.

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