Multiple Autoimmune Syndrome

My name is Julie Farkas. I’m the admin for the multiple autoimmune syndrome group at the Autoimmune Registry, and I want to give you some hard-earned advice on how to manage your post-COVID world. I’ve had multiple sclerosis since the 1980s, but wasn’t diagnosed until 2001. Because medical research is light years ahead of the research in the 1980s, I don’t think it will take that long to unravel the mysteries of post-COVID disorders. But until then, you may find it difficult to manage all the physical, mental and social problems you will encounter. So here are my observations and advice for you as you travel on the long road back to wellness. 1. Living without a diagnosis while you are obviously ill is hell. If you begin to feel de-valued as a family member, an employee, a friend and as a patient, it’s because you are being de-valued. Many people shun sick people, and people who pretend to be sick are shunned even more. If you begin to feel this way, get to a counselor as quick as you can. A constant state of feeling “less” is not mentally healthy. A good counselor can help you with this. 2. If a medical professional tells you your symptoms are, “all in your head,” move on. This is not the doctor for you. One exception: the doctors who told me it was all in my head were right, sort of. I had multiple sclerosis. But with that exception in mind, move on to someone who takes your health problems seriously. 3. Your symptoms are not your new normal. Uncertainty is. Every day you may experience different symptoms, different levels of energy or new symptoms. This uncertainty creates physical and mental havoc in a person’s life. If you are having difficulty with this, get a therapist. Venting to a stranger is a better strategy than venting to your family and friends. And finding ways to cope with uncertainty is a life skill that will help you for the rest of your life. 4. Coping with compassion fatigue. Eventually, those nearest and dearest to you will enter a state of compassion fatigue. This is especially true if you are sick, but without a diagnosis. The only antidote for this is to find a way to support your friends and family while you yourself are at a low in your life (see point #3). If you are in a relationship, if you have children, if you are a sibling or an adult child, find a way to interact with them in a positive way. Make sure all of your communications are not about your illness. Call a friend or family member when you have good non-medical news about you or even someone else. Call or email your friends and family and ask how they are doing. Let you know you care about them. Find a way to keep connected. I know it’s hard, but this is another life skill and will help you for the rest of your life. 5. Document everything that is quantifiable. Get a blood pressure monitor. Take your blood pressure twice a day at the same time, and any time you are feeling especially bad. See if there is a pattern, or if the pattern fluctuates widely. Get a pulse oximeter and do the same. Get urine test strips and test your urine every day. The point is your doctor wants and needs measurable, quantifiable data that will lead to a diagnosis either now, or when more data is available on post-COVID issues. 6. Take photographs. Unusual swellings, flushing, rashes, etc. Not one-off events, but multiple events that are somewhat alike. These too will help a doctor see a pattern of abnormalities. 7. Find out the health history of every first-degree relative you have, and make sure you ask them about autoimmune disorders. Multiple autoimmune disorders in your family tree put you at an increased risk of an autoimmune disorder. Doctors are quick to ask about cancer, but not autoimmune disorders. And COVID-19 is an unusual virus in that the symptoms of the sickest patients are similar to mast cell activation syndrome. Post-COVID symptoms also look like autoimmune disorders. Are we watching autoimmune disorders develop in real time? Who knows? But one of the first symptoms of an autoimmune disorder is, yep, you got it, fatigue. Sound familiar? And what does a doctor do when you show up for an appointment and say, “I’m tired.” Nothing. But if you have quantified, measurable data that you have tracked over time, and if you have a family tree littered with autoimmune disorders, you get put at the head of the line for tests and maybe a little compassion for your symptoms, even if you don’t have a diagnosis. When my first multiple sclerosis symptoms appeared, I went to a neurologist. After many tests, most that are no longer in use, the neurologist had no diagnosis for me. And then he told me, “You will either get better, get worse, or stay the same.” I thought that was one of the cruelest things a doctor had ever said to me. But it turned out his prognosis was the most honest statement about my condition. On some days I am better, others worse, or sometimes the same as the day before. I hope the rapid pace of research that is now in progress creates better diagnostic tools and treatments for everyone who has either a post-COVID disorder or an autoimmune condition. In fact, I hope we all get well again.