Part of the difficulty with being chronically ill, is that it’s common to push back towards accepting your situation. You are so focused on getting better, getting back to “normal”, step by step, that any lack of progress or deteriorating is much more of a mental blow than it should be.
There’s a desire to have hope but also to push back on accepting that you are damaged, whether mentally, physically or both. Accepting this state, can feel like giving up, but this is a damaging perspective to hold on to, mainly due to how much pressure you put on yourself, you burden yourself with the requirement for a cure.
The point is, that being realistic is necessary, if you’ve suffered for 10 years, you’d be lucky to find improvement in the next 5 years, reversing bad health takes a long time. For example, studies show, it can take up to 4 days to recover from just 1 hour of missed sleep, now imagine you’ve lacked sleep quality for 10 years, you probably can’t make up for it in a lifetime without some miracle therapy.
A good strategy to have is in awareness, and learning, become more aware and learn more about your limits, what helps, what doesn’t help, try to find patterns, but don’t put pressure on yourself to find these patterns this week or this month, it could take years. Don’t try to learn or think too much when you’re at your lowest, you should ideally do nothing strenuous whether mental or physical, even checking through social media and news is incredibly draining as a distraction.
It took me 10 years to accept my situation, I didn’t even want to say I was chronically ill, or disabled, it felt weird to accept that; after all my disability is with energy, severe depression and chronic pelvic pain, it’s not very visible. Every day was focused on solving the problem or trying to avoid the problem, but the solution continues to elude me. I realised after many failures and many years, that the solution, obviously isn’t concise and easy to find, it’s incredibly complicated, and most importantly barely in my control.
This was somewhat of a blow at first, to accept you have little control over something, it feels very defeatist. But after a while, this perspective started to free me of some of my burdens, it let me conserve some energy that was constantly being wasted on problem solving; a problem that I couldn’t solve.
It’s similar to how you try to think of a name, whether it’s an actor or musician, and you can’t think of it, you reluctantly give up after an hour, but your subconscious mind continues to try to solve the problem, to dig through your memories, then randomly hours later, you’ll suddenly realise the name. The issue with the problem of health, is that your brain won’t suddenly come up with a solution, it will continue to stew, trying to find a pattern, an incident, a cause, for negative or positive situations you suffer. Why did I sleep badly last night? Why am I painful right now? What’s making my pain worse? Why don’t I feel any emotion? Why is nothing enjoyable today? What’s wrong with me? Where should I focus on? What should I do? The questions are endless. Yes, they have various answers, but to constantly ponder on these things daily, is futile and wastes your energy.
Instead you need to come up with strategies for all your ailments, and if they happen, refer to your strategy with no need to think deeply about it. Thinking can be a waste of your precious energy, because you’ll think all day, think yourself into a pit.
Create these strategies when you’re at your best, not when you’re at your worst, and train your awareness to trigger your reaction. It might not be something you can do immediately well, but something you can fall back on more and more effectively.
Even this strategy is fairly taxing, taking on any new perspective and habit is draining. It’s not something you should pressure yourself with either. Taking the pressure off yourself to constantly improve and do this or do that, is ironically itself a strategy, but one that is more manageable than simply doing nothing and feeling down about your lack of progress.
Some people with chronic illness, might not be the type to constantly think and try to solve their issue, after all it comes down to personality types. In this case, you’re probably more of a doer than a thinker, and your “doing” is the part you need to reduce. You probably push yourself too much, without realising how much damage you’re doing. After all before you get ill, pushing yourself is the natural way to succeed with something. Learning how to do nothing is likely something that you need to do, whether you think too much or do too much.
This is why meditation and mindfulness are so widely recommended. Both these things feel like a bit of a pretentious solution to chronic pain and mental anguish, “Just think about nothing and you’ll be better!”, or “Love yourself, and accept the present”. These bite-sized statements can seem condescending, I often find myself parroting the same type of statements, this article included, and it’s hard to reconcile trying to communicate an idea simply, versus saying something that doesn’t disrespect suffering.
Suffering is so deep and personal, that it can’t be summarised easily, I could write 1000 words or 100,000 words, and in the end, it’s just words, they don’t really come close to easing any suffering unless it’s from a person close to you. Logically we all need direction and guidance, and help to solve our problems, yet it feels like the only one who can solve it, is ourselves. Annoyingly we find that after days/weeks/months/years we can’t solve it, it’s not in our control. It seems like there’s a paradox of dependence. Ultimately, everyone has problems, but to burden others with our problems is in itself a burden.
Overall, I just hope people’s suffering can be eased somehow, yet I know words aren’t up to the task. It feels frustrating that there is no simple solution, or a concrete plan for improvement. Often it just feels random, life randomly improves or randomly deteriorates. I guess being accepting and being aware, might slightly improve your chances, and so I continue to find ways to improve my chances any way I can, and hope you can too.
To live is to suffer, to survive is to find some meaning in the suffering.