From Diagnosis To Acceptance: The Grieving Process Of Chronic Illness

 So many chronic illness sufferers have had to watch the death of who they once were, but this doesn’t mean their new self has to be any less amazing!

This article was originally published on The Odyssey. Click here to view it there. 

Today is going to be spent doing the medication shuffle, a loving term I’ve given to the gargantuan task of predicting, organizing, and packing the cocktail of pills I’m going to need in order to successfully get myself through my vacation next week.

Before I was ill — a phrase that should probably be in inverted commas due to the weight it holds — budget travelling was my raison d’etre. My life revolved around scoring cheap flight deals, shacking up in hostels, and trekking for hours on end around wonderful and mysterious new countries. Now, life is very different.

I was ill for years before I knew I was ill. Let me elaborate: I was plagued with uncontrollable symptoms, endless fatigue, and shaky mental health, whilst simultaneously being told there was nothing wrong with me. If you need some perspective, the problems started when I was in my early teens; I didn’t get my first diagnosis until a year after I’d graduated university.

Like many who go through the long, arduous journey of finding and diagnosing their chronic health problems, as my illnesses began to stack up I fell into a sort of grieving process — grieving for the life that I once believed I could have.

DENIAL

From my own experience, and what I’ve heard from others, there are two ways to react to your diagnosis. Either you feel like your life has fallen apart around you, or there’s an overwhelming sense of freedom from finally gaining an understanding of your ailments. I was pretty decidedly the latter; I ignored all the ‘incurable’s and ‘for forever’s and, instead, pictured my miraculous recovery. I saw myself gallivanting across the world again, after magically overcoming all of my problems. In short, I was in denial.

So time went on and I did all I was meant to. I stayed sober, avoided bad food, did regular yoga, and meditated when I could. Now I finally had a name for the condition and I had started to make headway with the doctors. It wasn’t long before I had three more shiny new labels to explain my myriad of symptoms, but still that didn’t deter me.

ANGER

Just before my diagnosis, I’d planned my trip for that summer. It involved a month inter-railing around Europe, before jetting off to Australia — via Asia — for another month or so. It was ambitious, even for the healthiest of travelers, but I was determined and on my leaving date I was packed and eager to go.

Four days into the trip, it was clear the plan was unsustainable. I was getting little-to-no sleep in the hostels, had no control over my diet, and the constant stress of packing up and moving on was taking its toll. After a disastrous train journey to Berlin, I had little choice but to fly home. Needless to say, I was an emotional wreck. I spent a long time beating myself up, hating myself and, even worse, blaming myself for the situation I was in. I felt useless, pathetic, and uncontrollably furious at the world for dealing me these cards.

BARGAINING

After a few weeks recuperation, I tried a different tactic. I decided I was going to go to Australia, but this time there would be no more hostels, no more overdoing it, and an extra effort to keep my diet in check. Surely, if I made all the necessary compromises then things would be OK, right? Wrong.

I did make it to Australia, and I did have an amazing time, but the deals I’d made with the universe were not providing me the shining health I was hoping for. Several outings on my trip ended at the hospital or doctor, and many more days were spent consigned to bed.

This period was perhaps the most difficult to deal with mentally, because I was so sure I could find a way around my health problems. This was not the plan; I was meant to have it all worked out; I prayed, I meditated and sent out good vibes, but every day still brought on the same familiar ache of constant symptoms and flare-ups.

DEPRESSION

When I got back, I was plunged into a pit of depression. Every-one kept telling me how amazing it was that I’d manage to get to the other side of the world and back, but for me all I could do was re-live how hard every moment had been and how much strength it had taken. I didn’t regret going — far from it — but I felt like I had finally been brought face-to-face with the stark reality that the budding young vagabond I once was, was now well and truly dead.

I spent most of the following year resigned to my bedroom, scared to attempt even the simplest trips for fear of struggling with a bad flare up. My travels were limited to the three-hour train journey to visit my parents and school-friends back home. Life as a recluse did not sit well with me, but it did afford me some valuable thinking time. Gradually, I began to see my new self: a warrior — not due to my ability to overcome, but for my power to endure.

My health might always be bad, I might not be able to do the same things as other people my age, but I realized, with courage, wisdom, and strength, nothing can stop me from living the life of my dreams.

ACCEPTANCE

Everyone’s journey to acceptance is different; finding comfort within your illness is such a personal path. For me, it was about learning to take things slowly. To listen to myself and my body, and to throw away the unrealistic expectations and honor the hardships I have to endure with pride and grace.

This summer, instead of planning a trip to rival Marco Polo, I settled for 10 days split between Spain and Portugal. This means enough time to really soak up the sights, but not too long to make enduring any health problems into a living hell. If it goes well then I have another few potential getaways lined up for over the winter — no pressure, no stress, just taking each day at a time and seeing how it all unfolds.

So whilst my vacation requires more planning than ever before, and the chances of me wasting at least one day exhausted or in pain are very high, that’s not going to stop me from doing the thing that I love most.

If there’s one facet of wisdom you can take from my experience, it’s to not beat yourself up. Yes, health conditions can change everything, but finding happiness in the compromises you are forced to make is a skill that, once learnt, will give you wings and the power to fly, no matter what life throws at you.

25 thoughts on “From Diagnosis To Acceptance: The Grieving Process Of Chronic Illness

  1. So sorry to hear about your illness, but I am glad that you are now taking things slow, you have more time to enjoy the place and the culture of the country. Good luck in the future, and thank you for sharing this. You are an inspiration!

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  2. I simply cannot imagine how frustrating it must be to be ill and be told for years that there is nothing wrong with you, yet every day is plagued with pain. After your diagnosis, it really was a grieving process for you though wasn’t it, and I’m glad you are at the acceptance stage (although that feels weird saying that if you know what I mean!). You are an inspiration – if you can travel given what you go through, then if people truly want to, nothing will stop them! #feetdotravel

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    1. yeah – it was annoying! and thanks :’D ahaha. and that’s just it: it’s so possible to still travel and I’m so sure it actually improves your health (or at least your mindset). I feel like chronic illness sufferers get scared to be sick away from home, but changing your environment can be incredible healing!

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  3. This is such an inspirational post. I am sorry to hear about your illness but I am glad you had the power to move on, to keep travelling even if it’s slower than before. Most of the people would give up, they will blame everything and everyone for their condition but this was not your case. You are indeed an inspiration. Good luck!

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  4. Great story and glad you are persevering. Some people I know with chronic conditions don’t travel and they feel more isolated. I have a few health issues myself but I go at my own pace and sometimes solo just so I can do what I need to do. Enjoy life one day at a time!

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  5. Very inspirational story and so awesome that you have learned how to deal with your illness and not let it take over your life. Sometimes life is cruel but it’s all about how you react to what it throws at you. Thanks for sharing – it can’t be that easy!

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  6. Big hugs to you, Sarah. This post is awesome on so many levels. Sharing what you’ve been going through will certainly help others and allow them to go through grieving for their former selves just like it seems you have. I’m so glad you’ve persevered with travel, albeit with a lot more to organise. It really is good for the soul!

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  7. Inspiring post showing that illness doesn’t stop travel. Admire your determination and wish you well for the future ~ Carole #feetdotravel

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  8. Inspirational Sarah, I have fibromyalgia so I can relate. Sometimes it can be exhausting, and exhausting, I’ve learnt to say stop, go slow and don’t be too hard on yourself. One tip for travelling with a cocktail of pills, don’t separate them all in a pill box, as you may be challenged what you are bringing into the country, like Singapore, make sure you take all your medication in their original packaging.

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    1. fibromyalgia is one of my many conditions as well. Incredible that you suffer as well and still manage to travel so much 🙂 nice to know there are more of us out there! I know about the pill thing already as well, actually because I went to Singapore! I usually take a Doctors note with me when I travel as well. I’m a bit worried though because I’ve lost the box for my sleeping pills and I’m going to Iceland this weekend. I didn’t manage to get a letter in time either. Have you had any experience with Iceland? (I figured it would probably be ok?)

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  9. Sorry to hear about your illness and I understand it must have been hard writing this post. One of my travel friends was diagnosed with cancer and couple of years back. She is recovering now and starting to travel again but it really does make your realise life is way too short. I liked the comment “I stayed sober, avoided bad food, did regular yoga, and meditated” because it can be applied to everyone, sick or not. If you want more energy then eating clean, plus doing something good for your mind and body daily is a good place to start.

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    1. yeah exactly! that’s totally my belief. I feel like we all neglect our health so much and just doing those simple things can have such a major positive impact 🙂

      Glad to hear your friend is recovering and back on the move again 🙂 I bet she’s loving it twice as much after all she’s been through. Health problems definitely teach gratitude if nothing else!

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  10. Such an open and honest look at your journey Sarah, thanks for sharing. I hope the trip to Portugal and Spain turned out to be a better approach and you continue to find new ways to manage doing what you love. It’s interesting, you’re not the first person to talk about having to abandon a trip and feeling a sense of blame or failure. I know people can’t help the way they feel about it, but to me it’s braver to realise and acknowledge things aren’t working than to press on and put yourself in an even worse state.

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    1. yes! you are so right with that last point! Sometimes it takes a bit of time to learn that though. With my health, it was very much about learning my limits – and I feel like I had to push myself to know where they were. Hopefully never again though 😀

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  11. You are incredibly brave for sharing your story with all of us and the rest of the world. I have recently found out about a condition I have as well that can potentially keep me away from travelling and to me this is still new. Until the final diagnosis comes in, I am not even thinking about the possibility of never ever being able to travel. Taking things slow is good and I’m glad you are giving yourself another chance in travels. Best of luck with your health!

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