How do we manage our autoimmune illness?

Autoimmune illnesses are systemic illnesses. Even if, in theory, an autoimmune illness targets only a certain part of the body (the joints in ankylosing spondylitis and polyarthritis, the thyroid in Hashimoto and Basedow, the muscles in Myasthenia Gravis, the skin in psoriasis, the blood vessels in vasculitis, the small intestine in celiac illness, etc. ) actually involves the whole organism because body parts are interdependent, so a dysfunction of one organ implies dysfunction of the whole organism. I don’t have a medical background and I don’t want to give a lecture on autoimmune illnesses, but I want people to understand that an autoimmune illness involves the whole body, even if it initially starts in just one organ.

An autoimmune illness once triggered is not cured, but it can have periods of remission, in which you feel relatively well, but it is always with you, and at any time a flare can be triggered to remind you of this. How can you go into remission and what can trigger a flare? It is always about a combination of factors, and this is specific to each individual. In general, the lifestyle is involved: diet, movement, stress, sleep, the way of seeing life, but also certain viruses, bacteria, intoxications.

What can we, the autoimmunes, do? Let’s find our own balance.

1. Let’s learn to prioritize, that is, learn to say “no” to certain requests. When we were healthy maybe we could move mountains, but now we feel like tired koala. It would be good to realize that this is the state of affairs now, to set our lives accordingly and tell our loved ones that this is how we are now and probably all our lives we will be like this, and to others…”sorry, I can’t help you “. No one raises a statue to us if we “sacrifice ourselves”, in fact this is probably what made us sick.
2. Let’s not push ourselves when we can’t anymore, when we’re tired, when we’re in pain, when we’re having a bad day. If it doesn’t work, that’s it, it doesn’t work.
3. Let’s learn to organize ourselves so that we always have a back-up in case we have a bad day. Let’s know that the house doesn’t catch fire or we lose a project if we woke up with pain and can’t get out of bed or we slept badly and in the morning our mind is broken and we can’t think straight. And in general, let’s be organized so that we can fulfill our duties as easily as possible and have as much rest time as possible.
4. Let’s know what’s good for us when we have a longer or shorter flare: a medicine, a tea, a warm bath with salt, a massage, a short exercise program, or just to be patient and rest.
5. Most of the time we don’t know what triggers a flare, but sometimes we notice the triggers. I know that after a virus of any kind a flare of spondylitis follows, so I take measures. And I have patience for it to pass. Calm patience is essential. Not denial, not resignation, not despair because “it hurts again and it won’t go away”.
6. Go to the doctor at the appointed times for evaluation. It is good to know the stage of our illness. But don’t make an obsession out of it. It is good to have a good relationship with the doctor, but it is essential to have a normal, personal life. To feel that our life belongs to us, that we decide, that what we did got us sick and that we are also responsible for our well-being. Doctors only help us. If they can.
7. I said we have to be patient. But that doesn’t mean we wait for healing to fall from the sky while we persist in our bad habits or for the miracle pill to be invented (see point 6). Let’s actively seek methods that make us feel good: a certain kind of nutrition (not a diet, but a style of eating that we implement for life or for a long period of time), an exercise program, dietary supplements, weight loss and weight maintenance, a mindset that puts us at the center of our universe, managing negative thoughts, etc.
8. Only God, Buddha and other more or less human gods have attained perfection. The rest of us are human, with good and bad. We are sometimes allowed to be angry, furious, desperate, selfish, envious. But just observe ourselves in those moments, and keep a bit of lucidity in these states, as if looking outside ourselves with indulgence for our mortal condition. If we are desperate that it hurts and doesn’t go away, let’s say: “I know it hurts. I’ll stay in this state for another hour, then I’ll see what I can do to feel better.” If we are angry: “I stay angry for 5 more minutes, break a plate, then calm down and see what I can do to fix the situation.”
9. Don’t lose hope. Never. Usually the solution is beyond our understanding at the time, but it exists, it is there, and we will find it at the right time.