My friend, who is an alternative therapist’s nurse, was telling me about the unusual reaction of a new patient with spondylitis and multiple sclerosis when she was told some bureaucratic things she had to do before starting acupuncture therapy (did you know that at the National Institute for Complementary and Alternative Medicine you can do a series of acupuncture therapies with a referral from your family doctor, just like you do a series of balneological recovery, for example? It’s just a modest co-payment). My friend got scared when the patient put her hands on her face and started crying and it took her a while to calm her down. She’s the kindest nurse I’ve ever met, and I’m not saying that because she’s my friend. I was with her many times when the patients called her at the most unusual hours, and she answered them with the utmost care. The reaction of the patient with spondylitis and multiple sclerosis shocked her and she asked me why she behaved like that? I replied, “Do you know how much pain, physical and mental, is being shouted in the spondylitis or other autoimmune diseases groups? How much helplessness, despair, sometimes malice and intolerance, non-acceptance, fear? You’ve probably noticed some reactions in me too that you didn’t understand, but you’re my friend and you accept me for better or for worse. We, the autoimmunes, carry a heavy burden, I don’t want to make comparisons, but think that in addition to all the fuss, the shortcomings, the traffic, children, spouses, deprivation and all the things of normal people’s lives, there is also the daily physical pain, constant, much greater fatigue than normal for daily living and the mental state induced by inflammatory and hormonal changes of an autoimmune disease. Maybe that’s how you’ll understand why your patient started crying hysterically when you got her to sign on two pages.”
We, the autoimmunes, carry a heavy burden, but we must not let that bring us down. Sometimes we need to explain to others why we behave in a certain way, people are usually well-meaning. But for that it is necessary to understand ourselves first, with compassion, but as correctly as possible, with both good and bad. Let’s not think of ourselves as inferior or inferior to others. Let us not apologize, nor ask for mercy, but understanding, and grant the same understanding on our part. Because we are a stranger to healthy people, who sometimes have a suffering, solve it and continue to live their lives. We seem “normal”, but we are not, at least in the broadest sense of the word.
An autoimmune disease does not mean that only one organ is affected, but more parts of the body, the longer you have the disease, the more parts of your physique and psyche is irreparably destroyed. “Ah, so spondylitis means your joints hurt? Well, you see, I hit my knee a few days ago and my pain doesn’t go away, and my joint hurts too”. No, spondylitis means generalized inflammation, and the first and most “palpable” symptom is joint pain. But inflammation can also be in the arteries (and thus all the blood-fed organs are affected), intestine, brain, optic nerve, mandible. And for the picture to be complete, the medication is aggressive and itself worsen what it finds: it can cause ulcers or gastritis, TB or cancer, intestinal, kidney or liver diseases. Given all the above, it is not surprising that depression and anxiety also make their presence felt. In fact, there is a vicious circle when it comes to mental illness: mental health negatively influences inflammation, and inflammation exacerbates depression and anxiety.
I do not make this post to scare the newly diagnosed, to upset those who have had the illness for a long time or to terrify the healthy ones. For the correct management of an autoimmune disease, it is necessary to consider all aspects in order to make the right decisions.
Can we heal? Yes, as long as we consider remission healing. When we are in remission, the tests are relatively normal, and we feel relatively well. This does not mean that we can let go and return to the lifestyle that made us sick, but keep our teeth on what put us in remission (diet, hydration, exercise, stress relief, rest, relationships fulfillment, medication, alternative therapies, etc.).
Are we abnormal? It depends on where you look. We each have our own personal normality, not compared to others. We do the first report of normality to ourselves, and only then to the community. And a community should respect its members and not ask for more than they can or want to give.