Oct 04 , 2021
"You look absolutely fine to me!" beamed the Community Healthcare assessor.
It's not the diagnosis but the symptoms that seems to be accountable. So if you are diagnosed with something like life limiting systemic scleroderma and severe Raynaud's, where you have peripheral shut down several times a day...it doesn't count.
For the less medically inclined, Raynaud's is a circulatory auto immune condition where upon blood vessels spasm in the body, cutting off circulation to limbs and internal organs (in my case) as a result of response to stress, temp change, virus, medication, physical stress....and just about whatever it likes!
Diffuse systemic scleroderma with heart/lung involvent means my immune system is shutting down my vital organs. In effect, my immune system is acting like cancer cells, attacking myself.
For me, and many others, a Raynaud's attack begins with sudden feeling of cold, fatigue, and cold, blue, numb digits and hands. This leads to lack of concentration and worse as I try to resist. My oxygen levels drop, as does my body temperature, and I feel frozen even in blistering heat. Because of the lack of blood flow, and frequent, prolonged Raynaud's attacks can lead to tissue death and gangrene. In my case, which is not common, the peripheral shut down leads to further blood flow restrictions to the internal organs and tissues. Causing irreparable damage everytime it happens (such as lung fibrosis, or other tissue death).
When this systemic shut down suddenly occurs, I pass out due to restricted blood flow (hence oxygen) to my heart, lungs and brain. This could result in complete shutdown of my heart, leading to cardiac arrest and death. But of course, to everyone I look "perfectly fine!" (If I had a pound for every time I’ve been told this!). Being like a "ticking bomb" that could expire any minute is not externally visible.
All of these are rare symptoms of severe Raynaud's Disease to varying extents, depending on individuals and other existing conditions.
Of course that's just one problem I have. I have in total 4 or 5 overlaying auto immune conditions which make my life just an existence. But to others, I Iook fine!
The diffuse systemic scleroderma has caused lung fibrosis and hardening of my soft tissues. It's a slow death, where everything is shutting down slowly- in my instance anyway. It's affecting my heart, breathing, mobility and speech and etc....depressing, debilitating and progressive. I am on a daily concoction of many tablets and drops and ointments. These are supposed to reduce the effect of symptoms but do not prevent progression of the disease until ultimate demise.
My face and body have changed. I need plastic surgery at least once a year to relieve problems with eating and choking on my own tongue due to narrowing of my mouth and throat. One reason dental treatment is hard for scleroderma and sjogrens sufferers and we end up losing our teeth early. As I have started to.
I am trapped in by my own body and it's an existence I would not wish upon anyone.
But I look fine to others.
How many people reading this suffer from auto immune conditions whether systemic such as Lupus, MS , arthritis, Crohn's or visible such as eczema, and psoriasis? I don't plan to give a lesson in medical diseases here but what I am trying to express is that society rules that if you look well or chirpy or even have a positive attitude, then you don't have pain, incontinence, reflux, epilepsy, digital ulcers (with excruciating pain), nausea, debilitating fatigue or on chemotherapy daily for weird and rare auto immune conditions or even depression. Thus, it seems that looking fine equates to not needing support and care.
Sadly, these principles extend to funding and NHS CCH assessments for entitlement of home assistance. They advertise for clients because it's a commission based business but when it comes to the crunch, the opinion is that "there are people in care homes." So of course, why should I or anyone else chronically ill be entitled to a quality of life in their own home?!
The law states that individuals are entitled to have a say in their care and life quality. However, when the NHS hands over the running of it's services to an outside company such as CCH, the human element is subsided and taken over by profit margins.
Personal dignity and pride doesn't allow everyone with chronic life threatening conditions to carry a notice board stating as such. It helps to pretend there is nothing wrong so we can appear to have normal lives. Specially if you have children who are affected by watching you suffer and deteriorate.
I think the old saying still stands that we really can't judge a book by its cover, unless you have read and lived through it's story. And to think, if I continue writing, I would spill a whole can of worms that authorities would not look favourably upon. And the stress may just be the end of me!
If you are affected by a chronic auto immune condition with life changing symptoms, however minor, please write in.