Introducing The Battle Within to the BDN blog network

You haven’t been feeling good for a while. Perhaps for years. You’ve been beating yourself up in your head for not doing all that you expect yourself to do. Exhaustion that feels like you are being held down by something invisible as you try to do the smallest tasks. Walking “through mud” makes even the shortest distance from point A to point B cause you to need to sit down and rest. Maybe even causes you to need a nap. It takes you days or sometimes weeks to recover from a camping trip, a simple trip to the mall, or grocery store, or to the mailbox.

Pain that doesn’t make sense has become a common occurrence. Perhaps after driving a couple of hours, you can barely walk because your feet are in so much pain. Perhaps you have back pain that shows absolutely nothing on X-rays or MRIs. Maybe it’s your hands that always hurt, or your hips, or your eyeballs. Doctors eye you cautiously and worse yet, sometimes suspiciously due to the opiate crisis in our country. The last thing doctors want to do is feed the habit of a seeker.

Perhaps you have a primary care provider who doesn’t “believe” in FIbromyalgia. Perhaps you have a provider who doesn’t readily give referrals to specialists. This can go on for years before one day something magical happens, a doctor listens to you. There are lots of questions with acknowledgment of the level of pain you have been experiencing and how difficult life has become. They ask if you feel depressed. They empathize and then, that magical moment, they say they are going to refer you to a rheumatologist. Finally, someone has truly listened. Someone who can help doesn’t think your symptoms are just all in your head.

Your rheumatologist appointment was months away due to their schedule being packed, but your appointment day finally arrives. Introductory handshakes are gentle. There are lots of questions about pain levels that are acknowledged with compassion. Nothing is said about the extra weight your body is carrying. You are grateful because you remind yourself each and every day that you are overweight. Nothing fits; and looking in the mirror can cause even more pain to your heart, to your psyche. You haven’t been able to exercise in years without excruciating, burning pain that lasts for days after. Food has become the only thing that doesn’t hurt in your life. Pressure points are explored and areas hurt on your body that you never knew existed. Questions, lots of questions, are asked about pain levels, activity levels, how much you sleep. Finally, someone seems to understand! You leave the first appointment with orders for lots of blood work and a follow-up appointment is scheduled for a couple of weeks out.

A few days after a dozen tubes of blood were drawn, your rheumatologist calls. Not their nurse, not their secretary. Your new specialist calls at the end of their day of seeing patients. They tell you the results of your blood work. Perhaps they say a level was high, a marker was there, a certain level was off. You aren’t really sure what it all means. All you understand is that they tell you that you have an autoimmune disease. There’s a good chance you had never even heard of the autoimmune disease they mention. There is a reason for having felt so horrible for so long! Hallelujah! Wait, that’s not good. What is good is that the path for starting to manage your autoimmune disease has been found. You feel grateful and worried all at the same time. The journey ahead will be unpredictable. At times, during a flair, it will feel like climbing Mt. Kathadin.

At times, when a flair has subsided, the simplest activities will feel like a walk along a sandy beach at sunrise. You will find immense enjoyment out of the pleasure of doing the little things that before caused extreme pain and exhaustion. You finally have a provider who understands the reason and is going to help you make a plan.

Dawn DeBois

About Dawn DeBois

Florida born and Maine grown, my life has been atypical. My childhood was full of loss and severe physical pain. Both emotional and physical stress during childhood has been found to contribute to autoimmune disease. My first autoimmune diagnosis was at the age of 28, which has led to juggling multiple autoimmune diseases (Hashimoto’s, Fibromyalgia, Ankylosing Spondylitis, Psoriatic Arthritis and most recently LEMS- Lambert Eaton Myasthenic Syndrome). I am officially now classified as having “Multiple Autoimmune Syndrome.” You know what they say, go big or go home!