Invisible diseases are on the rise. Autoimmune diseases are being diagnosed more often, but the time from symptoms to diagnosis can be a long and frustrating one. Often, people with genetic or autoimmune diseases look well. Because a patient looks well, and especially if said patient is female, it is quite the process to be diagnosed and treated properly.
Smiling below, I am outside on a pleasant day In East Hampton. Wearing a new-to-me raincoat by Etro, I am genuinely happy to be outdoors . I look fine, I think. Can you see evidence that I am ill ? I think not. Ok, perhaps that is an awkward angle for my hand ?
When the wind blows, however, you can see both evidence of treatment side affects and symptoms. As well, my chest cartilage is so swollen, that a doctor can see this with his or her own eyes, without the need for special imaging techniques, and the cartilage is also swollen visibly at my ears.
I have oodles of signs as well, which is a doctor’s way of diagnosing you with “evidence”. I am partially deaf. This disease affects my hear, eyesight, hearing, and vessels. It can and does affect my windpipe, and can cause suffocation. I am not worried about that, I am well controlled!
Below my broken hair, courtesy of methotrexate, a chemotherapeutic drug reserved for serious illness. Not a flattering picture!
If you look closely you can see that my eyes are not working together well. There are many photos where this happens but I do not publish them. I often get scleritis, an inflammatory eye disease that can lead to blindness , and my mother become blind in one eye due to a similar disease. This is some real and serious stuff here.
Invisible diseases are frustrating because when a person seems well, there can be a mismatch of expectations. Further, I Like to project a well , even radiant vibe. I do not want pity, Even with this disease, pretty well controlled, I consider myself very lucky.
A quick mention of my up-cycled coat and sweater. My raincoat is Etro, a favorite brand, and was affordable only because it was bought at a very deep discount at consignment . It is completely waterproof ! This pink plaid is best for spring and summer, but I can wear it with deeper colors for autumn as well.
Beautiful flowers sit on my table in East Hampton. The colors look somewhat similar in a delicious sort of way! Yes?
These are lightweight clothing items to be wearing in October, but we have had many days that have been unseasonably warm. Thank you Mother Nature!
One of my favorite bloggers is Jess from Elegantly Dressed and Stylish. She has a genetic disorder called Ehlers-Danlos Syndrome, that affects connective tissue. She deals with this disease with such equanimity and style. I will be worked up for this, too, as an additional diagnosis because of hypermobilty. When it rains it pours! Good thing I am waterproof today!
If you think you may have either RP or EDS, you can contact me, as I have become well-educated in both diseases. I have mastered Doctor Speak as well. I can help guide you to a real doctor. The key to dealing with any of the invisible diseases is being well-informed. For me, the only thing that is truly frightening is the fear of the unknown.
Does the autoimmune diet work for these invisible diseases ?
This should be a separate post, and may well be in the near future. But the answer, based on my own experience, is yes. It can help along with exercise and other good lifestyle habits. Keeping weight off the tummy, ( tummy fat is its own organ ! ) is extremely important for control of inflammatory disease. I am also doing well with CBD oil. Stress management, especially in these difficult times, is also important. See the fun bag below, that I snapped while in the Hamptons.
Many people with invisible diseases tire of the response: “but you don’t look sick!”. I for one, however, do not. Perhaps I am quirky this way.
It is 64 degrees outside, so dear readers, I am signing off to get some sunshine and vitamin D!
—— XOXO, Elle ——