Twenty years ago, I was diagnosed with a form of autoimmune arthritis. I’d had symptoms since college, but I had never been properly diagnosed. Two of my three brothers suffer from a form of the same disease. By the time of my diagnosis, it had seeped into every aspect of my life.

Up until then I was able to make accommodations through rest, early bedtimes, and appropriate exercise. However, in my early 40s, things heated up to the point that it became difficult to work. I have now been home and disabled for 13 years. On a good day, I may feel normal for a few hours in the afternoon. But if I overdo the most banal of activity, I will pay with more fatigue and joint pain later.

This is all to say that not feeling well and all the medical complications this entails are now the main subject of my life. As a psychiatrist who was in practice for 23 years, I am very familiar with people who are in a similar boat. Most of my patients did not feel well due to mental suffering (although some physical symptoms, such as fatigue, weakness, headache, and GI upset were common).

One thing all of us had in common was that the rest of the world had little awareness of our plight. In normal life, your body strikes a simple deal: give it ample rest and nutrition, and it allows you to go through your day and attend to what needs to be done without making a fuss. Other than meal and bedtime, it doesn’t bother you with demands for attention. When you are chronically ill, this is turned on its head. Your body demands attention like a fractious child. Due to its various aches and pains, it requires constant adjustments in your activity and mindset. Trying to feel better and dealing with how you feel is your full-time job.

Assuming, as is sadly the case, that many of these illnesses never get better, the question arises of how to live your life in the face of constant discomfort and a background of an increasing number of losses and limitations. For those of us in that situation, this is the real task of our days. The temptation and natural response is to try to feel better and imagine a better day just around the corner. But this makes you a hamster on a wheel.

What then is the path? Surely, we cannot give up some hope of improvement and attempts to stay healthy and, just perhaps, find a way forward. No, don’t give this up. Keep it on the back burner. But there is more work to be done.

The two central tasks of chronic illness are acceptance and a way to find meaning in a life you would never have chosen.

But don’t acceptance and hope contradict one another? How can we accept our losses, limitations and feeling poorly each day while we work and hope to improve our lot? The way to accomplish this is to remain aware that you are treading two paths. Yes, you must go to the doctor. Do your exercises and get a great deal of rest. You must avoid taxing situations and stay home a great deal of the time. Here, in fact, is where acceptance begins. It is exactly in living your life in ways that you would not choose where you seek to open yourself and accept your situation without a mental struggle. Letting go of this struggle does not mean letting go of hope for some change.

Acceptance includes a frank and often painful acknowledgment of where you are and what is lost to you. But in the long run, the pain of reliving your losses over and over is alleviated by acceptance. You must do your best to remain as healthy as possible while simultaneously acknowledging your limitations.

Part of this is a mourning process no different than the loss of a loved one. There is anger, bargaining, sadness, and hopefully acceptance. No more struggling with what might have been. This is harder for the chronically sick as the losses continue and some of these feelings will be revisited. That is part of the work.

When I first stopped working, I wondered how much more of myself could I lose and still feel like me. It turns out that I can lose a great deal and still be me. I have always understood myself as the sum of what I’ve accomplished in even one day. That obviously no longer works. You come to realize that despite your losses you remain yourself in the most fundamental of ways. How you treat people, what you value, and where you spend your limited attention continue to define you.

What I have found to be a more difficult question is finding meaning in your new existence. This is unfortunately an exercise that is not based on an equal distribution of luck in life. Those with more resources, more connections, and just plainly more opportunities have more chances of finding how to live a meaningful life. Here, as with anything else, you must play the cards you are dealt.

Meaning is based on values and will develop from what we find important. Interest and the involvement of other people are good places to start. But if you are stuck at home and cannot reliably get out to meetings, especially in the evening, how is this done? Unfortunately, there is no formula. Use of the Internet is a modern godsend to people like us. It makes possible connections to groups and causes that would otherwise be inaccessible. In addition, there are ways to learn new things, new skills, hobbies, etc.

There are times when this has felt to me like make-work. Usually, I have reverted to writing about psychiatry and illness, the two things I know and care about. But people vary a great deal in these personal matters. You do not need to start a charity, write a book, or learn a foreign language. Creativity, connecting to others, or just learning something new may bring new meaning to your days.

As I write this, though, it feels unsatisfactory. Recommending hobbies on YouTube does not truly feel like a way to find meaning, but rather more of a pastime. The very best suggestions I have given are not meaningful in and of themselves. Rather, they are pathways into your own deeper sense of importance and interest. This becomes a highly personal matter that only you can judge.

However personal and unique to you, it is an important part of your path through life with chronic illness. The journey is no longer through the outside world—as illness takes much of that away—but into yourself. The various pastimes are doorways into your internal life. This is where you now spend most of your time and where you must plant a flag to declare the continued importance of your very existence.