We’ve all been there. Researching our varied illnesses; going through all the symptoms, all the research and how for some of us, there seems to be areas they all intersect. Our mind ticks on those intersections, and what was just a little research about an illness becomes a titanic project. You begin to see all these connections and intersections as not merely a coincidence but something more. Your brain and your notes begin to look more like something the CDC might use when tracking down patient zero, or even the FBI when they are tracking leads to find their killer. It’s stuff from a Beautiful Mind, but you can’t stop yourself. Why? Because you are looking for the common denominator. What caused all of this? Soon enough you are thinking like Sherlock Holmes or even House; pick either of these genius sleuths. But is there a common denominator? Is there a single reason that ties all the other symptoms/illnesses together? I don’t know.
I know I’m not the only one. I spend enough time on chronic illness boards and Twitter and all sorts of other places that the chronically ill and chronically in pain gather and I hear them connecting dots. Some have even been lucky enough to connect dots and bring all their hard work to a doctor who gives them the right test and ta-da, they have a diagnosis that covers all of what had been ailing them. I envy those people. I envy them even when I get strange looks from people who are like, “Why would you want another diagnosis?” Sometimes I am not sure if they mean a “new” diagnosis, or “another” diagnosis. For me, if it is another diagnosis that explains all the other ones, I would do the Snoopy Dance of happiness. I think we all want to uncover that smoking gun. But how much personal research is enough? And how do you spare yourself that WedMD Hypochondria that comes with the research?
If it were not for my persistence I would not have the diagnoses of Rheumatoid Arthritis or Fibromyalgia. The Fibromyalgia diagnosis came before the Rheumatoid arthritis and I had hoped that the new diagnosis of RA erased the Fibromyalgia, but no such luck. I was hoping because Fibromyalgia comes with a certain stigma and I wanted to avoid it. Even with the commercials (which, btw, drive me bonkers because I don’t think they represent us) people still do not understand what Fibromyalgia is and it is largely seen as this “lazy” disease or a “fat” disease and if you managed your time and got more sleep or lost weight, you’d feel better. I wish it were that easy. Even I have fallen into that trap of thinking if I did [insert whatever], I might get better. The plain truth is while getting sleep helps and eating healthy helps, there is nothing that is a cure all for my varied chronic illnesses. Getting back on track, if I hadn’t done much of the sleuthing for my symptoms I never would have landed at the Rheumatologist and found out I had RA too. But do you stop when you have a diagnosis even if you have strange outlier symptoms that don’t make sense? I say no.
I feel that it’s imperative that we advocate for ourselves and part of that includes the investigative work of our chronic illness and autoimmune disorders because, the other reality for many of us is that these illnesses come in pairs or even more. It is not uncommon to talk to someone with chronic illness and find out they have 3 or 4. I’m not sure if it is because the immune system is under attack, making us more susceptible or some other reason, but if you stop looking into your health and are not on top of things you may go undiagnosed for another illness. This could spell real trouble for an already fragile immune system. If you catch it early you can start receiving treatments and improve your quality of life.
Can you become a hypochondriac during this process? Yes. No doubt about it. Even doctors experience it when going to medical school. I think for me, the trick was taking breaks between researching chronic illness, not saying you have a particular symptom unless it has lasted two weeks or more and asking those that live with you and are closest to you, their input. You’ll be surprised how much they are paying attention. It still may be unavoidable to go through a period of hypochondria, but it won’t last long and through the research you may actually get some answers.
Some people are going to think you are crazy but take it in stride and have a sense of humor. As you can see here, I definitely have a sense of humor about it. I know how this may seem to those on the outside of chronic illness; this might seem to border obsession but that is okay. I don’t expect them to understand. Neither do I feel a need to explain myself. This is my opinion, but I think it is okay to be a little selfish when it comes to your chronic illness/pain and health. I think the benefits of paying attention to yourself, paying attention to new symptoms and possibly new autoimmune disorders, outweighs any of the possible negatives. This is all a part of self-care.
So, keep taking care of yourself. Keep researching your illness and your symptoms. You might uncover a way that gives you an even better quality of life and that is all we want.