Yes along the way my illness has taught me many things but it has definitely taught me that it sucks. It has taught me subtle variations of pain and numerous types of pain. I am now a connoisseur of pain. I know its infinite degrees and flavours and distinct types.
So I have some things I have thought about with invisible illness and learned.
1) Some days the pain wins: On a very bad day I can binge watch Netflix. Or read a few books. Because I literally am capable of nothing else. On days where the pain wins we must rest. We must find something to distract us from the pain and get through it. Since I have been introduced to Netflix, well hell, it works wonderfully for this.
2) Hermit mode: When I am in a lot of pain and just coping enough to get to work, sometimes, I have nothing left in me to socialize. I retreat. I hermit. And this has in the past cost me a lot of friends. They drifted away when I kept declining invites to things I could not go to…. too loud, too fatiguing, too far away. I am still a hermit but now, occasionally, I socialize in a very limited, careful capacity with a few select friends.
3) Support Groups: I admin for Facebook groups and Pages, sometimes, as well as members of others. They are very important. To know we are not alone. To deal with our isolation. To help with our bad pain days. To ask questions that come up. To know there are people always there that have your back when you go through problems.
4) Routines and Victories!: I set up a routine of small things I do every day. My 20 minutes of exercise, twice a week. My 15 minutes of physio, twice a week alternating exercise. My 15 minutes of meditation. My 15 minutes of housework. Spread through the day. My victories are small goals I accomplish over and above my routine. Like I did extra housework. Or any small goal I set up and completed. Victory is mine! I say to myself and I damn well celebrate that victory. Because I fight for them. They may seem small to others. I may even think ‘I should be doing more’, but no damn it… these are important to acknowledge.
5) Gratitude: At the end of a day in a journal I set aside just for this I write down one thing I am grateful for or thankful for. A study suggested it is quite beneficial for mood and it is also good to do at night because puts you in a better frame of mind. Also for every negative thought you have you need three positive ones to mitigate it… this is just one good thought you set to paper every day. I also write down good and interest notes about my day. I don’t talk about the pain or my health. But rather all the normal and good aspects of my day.
6) So not Cured: I’ve learned there will be people who think that since you are on a new medication, you are cured. Who think since you had a short term leave from work, you are cured. Since you have not mentioned your pain, you are cured. Since you are smiling and laughing, you are not in pain. I take this in stride. Some people do not understand chronic health problems or chronic pain. They do not understand that because they are chronic we have a baseline for our pain and health that we always deal with, then bad days and then severely bad days. And we generally hide our true condition in order to function out in society because it is expected from us.
7) Sharing: I have also learned with invisible illness there is a lot of revealing and concealing. We hide behind our facade of wellbeing when we are trying to function. And we reveal when we are trying to explain. But what I have learned is that I don’t need for everyone, or even many people at all, to understand my chronic illnesses. It is only important a select few people understand because I communicate with them all the time, are family members, close friends and loved ones. An employer I can reveal some basic important facts, or none, depending on what I believe they need. Same with coworkers. We have the choose to reveal and conceal what we wish. Doctors obviously I am very blunt with. But all other people, well, they do not need the whole story. Or any story. I may say nothing at all or a vague answer that is quite general.
8) Rest: I have learned there is nothing wrong with resting. We live in this fast-paced society that demands we productive ever damn second in the day. When we are not, we feel bad we were not Doing something. But part of moderation is resting when we need it. I actually say to schedule it in your day. Do some relaxation breathing, biofeedback, meditation, take a warm bath or have a nap.
9) Guilt: You know guilt of the chronically ill plagues us. It never leaves us alone. If we were not ill we could Do so much More. Such that what we can do is never sufficient. We are letting ourselves down, our family down and our co-workers down. Too much pain to move? Guilty about that. Can’t go out with friends? Guilty about that. Missed work? Guilty about that. I have learned it has no value at all. I have learned this fiction of who I could be or was is utterly useless for a comparison. I am me… not the me I Could have been or Was. Just me. And the me now has to live to my standards now. Which is why I live for my small victories.
10)Coping: I have learned that coping is an endless cycle. Sometimes we are coping extremely well and other times not so well. We are constantly learning new tools and tricks to help with the bad times, but there are bad times. And nothing is wrong with that. It is not a flaw in our coping, it is just that chronic illness is difficult and life itself can cause stresses on top of that. So we can get caught in depression, resentment, anger, guilt and take some time to get back to acceptance again.