Autoimmune, Systemic Illness, Rheumatic Disorder; All Say, "I May Look Fine, but I Don't Feel Good Today"

Living with the invisible illnesses like MS, RA, Lupus, Behcet's, Crohn's,FM, and others is most like having an invisible wheelchair that only you can see, and loved ones try to imagine. I am 37 and was diagnosed 5 years ago with Behcet's Disease, after a full year of diagnostic trial and error. BD is a rare, chronic, cyclical rheumatic disorder that causes inflammation in blood vessels (vasculitis) anywhere in the body. The American Behcet's Disease Association was a tremendous help in my early understanding of what to expect. The most helpful was being able to reach out to those who could appreciate my new set of circumstances.

Doctors can take all the fun out of being sick. I really shouldn't pick on my doctors; I love and appreciate those who have been marching along side of me through this ongoing battle to fight my Behcet's Disease. I just don't like seeing them as much as their smiles suggest they like seeing me. I have heard some rumors that they smile like that for everybody, but with what I have to pay to see my doctors I would just as soon believe they are thrilled to have a visit from their best of friends, me.

To be honest I look forward to seeing my rheumatologist; she is an autoimmune patient herself and really gets it. I think that is what we are all looking for in a doctor, someone who gets it, who understands us. Having an invisible illness and talking with many others who share similar experiences as mine, I have come to realize that one of the most frustrating things for autoimmune patients is that you can't see our disability.

If I had a cane you would not ask me to carry that heavy box, if I was in a wheelchair you would not ask me why I parked in that reserved spot. Not that those sufferers of invisible illness want accommodations or sympathies, but rather an acknowledgment that you know we are trying. Don't assume that because we say no that we don't want to be asked next time. Don't think that by not showing up that we didn't want to be with you. We just hurt today, or are very tired, and ever aware that if we overdo it that we will have to pay for the mistake with days, if not weeks, of solitude and discomfort.

Once people realize that you are sick they will often be hesitant to ask you to do anything because they don't want to force you to say no. This can leave us patients feeling isolated, lonely, and can cause a sense of worthlessness. Even if I can't that day, I want to be asked. Asking tells me that you value me. I tell people that if they will promise to ask, then I will promise to say no if I need to. This has taken the stress off of many relationships, especially those where help is often needed.

I have come to the conclusion that autoimmune patients have a core symptom set that we all deal with; fatigue, headaches, muscle aches, joint pain, and often depression. How the autoimmune attacks the individual is where we get our various diagnoses. The good news here is that we can talk with other sufferers of autoimmune syndromes and diseases for support with a sympathetic ear, and to lend support based on our own experience. Being there for others is a terrific way to feel that sense of purpose that makes enduring hardships bearable.

The only way the invisible wheelchairs of Autoimmune Diseases and Syndromes, Systemic Illnesses, and Rheumatic Disorders like MS, RA, Lupus, Behcet's, Crohn's,FM, and others will become visible to those who are not afflicted is for those who are afflicted to communicate effectively and with sensitivity what our needs truly are. Understanding that caregivers have their own needs, and that we must be aware of them. The greatest need of a loving caregiver is to know they are helping the one who they love enough to care for.

I encourage those who may be dealing with sickness and disease, either as a patient, loved one, or caregiver to use the comment boxes beneath this article to be an encouragement to one another.