Before my Lupus was offically sanctioned as such I was just a person with a plethora of vague symptoms, that sporadically presented myself to others for help.
Over the years through seeking this help, I have been told I am ‘neurotic’ or ‘hypochrondriac’. I have been laughingly asked “what new illness do you have this time?”. I have been treated as and explicitly told that its “all in your head”, to which my favourite answer is always “no, hardly any of it is”. I have been assumed to be seeking painkillers and felt the suspicious stares and whispers of countless Doctors and Nurses when the truth couldn’t be more different.
Many people with chronic and invisible illnesses tell the same story of how not being believed is almost worse than the illness itself. The fear of judgement and dismissal puts many people off speaking out and telling their stories. It also stops people seeking help when its needed.
I try not to think of whether I would have suffered less if the helpers had listened and not formed their opinions so readily. I try not to imagine if the disease progression could have been lessened or if I hadn’t began to question myself in the face of disbelief. The trouble is we are taught to assume the most likely, accept the probability. I try to understand that my truth may not be obvious to others who see a healthy and fit woman claiming she is ill.
But I am a Zebra not a stripy horse!
I often read quotes appearing on social media about how the opinions of others aren’t important, urging people to trust their own judgement or hear people say “it doesn’t matter what strangers think”. But it does matter and to those of us with invisible illnesses it matters a lot.
Doctors legitimise disease, through their processes of elimination, through commissoned and accepted evidence our dis-eases are authorised. I can now call myself ill, I could if I wanted to present myself as a sick person. I have a medically accepted name for why I feel the way I do and with this name comes treatment and sympathy. Although my disease has evolved over the years the majority of the symptoms; pain, fatigue, fever haven’t changed much. But my treatment has gradually altered, and not just it terms of medications and therapies. Blood tests are scrutinised more thoroughly, raised white cells are no longer brushed off as viruses, the presence of self attacking antibodies are no longer considered anomalies, my racing heart beat is recorded as tachycardia not anxiety.
But most importantly I am listened to.
Recently I told my Consultant who I see every 12 weeks that since starting on my new medicines regime I could see myself in the mirror again. Without explanation she knew exactly what I meant, which is worth more than I can successfully put into words. When my disease is flaring I do not see who I expect in the mirror, thats not to say i’m hallucinating (!), but a tired and empty person looks back at me and it shocks me. When my disease is under control, hello me!! Hello happy and energetic me. Not that long ago I had several weeks where I kept asking my husband and my friend whether I looked different to them, was my face different? my skin? No they assured me I looked the way I always look. Their opinions matter a great deal but my eyes tell me another truth, and the stranger understands.
The day I was finally received my official title of ‘Mixed Connective Tissue Disease, with Lupus variation’ (catchy!), I cried with part relief, part WTF. Finally there was a reason. Not a great reason, not an un-scary reason, but so much better than so much nothing-ness.
This validation, this other person’s opinion, matters so much to me. It opens doors previosuly slammed in my face and ultimately legitimises me and my experience.