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 There are many photos where this happens but I do not publish them.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.
My embroidered sweater is designed by J. Crew and was bought secondhand at LVIS for $7.00. I love the pretty pin wheel embroidery. Sorry, you can only see a glimpse here.
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.
I have discussed my autoimmune disease in several older posts. If you feel like going back to review you can read here, here and here.
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 ——
Oh Elle. I am currently working on a blogpost about resilience. I think it is incredible what rewards resilience can bring and I can only grasp a bit how difficult and challenging it must be to be resilient. I salute you (and Jess of http://elegantlydressedandstylish.com and Nancy of http://Nancysfashionstyle.com) for being so brave! Lots of love, Lieske
Yes, thank you for bringing Nancy up, she is quite brave. I look forward to your post!
love, Elle
I bet you have a wealth of information Elle. Because we do need to be our own advocate when it comes to our health. Good for you for being so well informed….it makes all the difference. Yet I think it’s so frustrating because as much as we do, we only have so much control over our bodies.
Thanks for being so open about your disease.
XOOX
Jodie
http://www.jtouchofstyle.com
You are so open about your life and that of your family, it is good to share!
Happy week my friend!
xo, Elle
Elle, you are such a good advocate for people to be more aware of how they talk to people who are ill, whether that is a physical illness/disease or a mental one. I suffer from depression, and I often have people tell me, ‘You’re so upbeat and positive all the time!” as though it couldn’t possibly mean that I’m also depressed or in a down-place. It’s called faking it, people! (I’m just really good at it). I love the Etro raincoat – they are one of my favourite labels (I have a few pieces, as does L). They treated us… Read more »
Whether physical or mental, it is all organic disease, and the stigma to mental illness should be removed promptly ! I think people who struggle with depression are more sensitive, and that makes them special in my book.
xo, Elle
That is such a cute raincoat! 🙂 I find a good doctor really helps – I am happy that the doctor I have takes the time to listen and help. I’ve had a few health issues in the past (although nothing like what you have to deal with) and it can be exhausting if you don’t have a supportive doctor – I’m glad you have that and can get help to manage your symptoms 🙂
Hope that you are having a good week and a nice start to November! 🙂
Away From The Blue Blog
Thanks Mica!
Yes a good and caring doctor can make all of the difference !
xo, Elle
Elle, I admire the grace and equanimity with which you handle your illness. Nothing about you looks amiss despite you pointing things out. It is good to be reminded that one never knows the dragons others wrestle with in life so adopting a kind and gentle attitude is always the best policy. Thank you for the reminder and for always inspiring me.
Thanks sincerely Susan!
We all wrestle with invisible demons I think! I appreciate this kind comment !
xo, Elle
That s a beautiful post. Although I have a total different disease, it is genetic and rare. I always see the positive things in life, and I believe that a disease can bring you a lot of good too. We all have our battles!
Thanks Nancy ,
I should have mentioned you as well, I am sorry. I know you are ill and and brave and beautiful nonetheless !
xo, Elle
Thanks for sharing this Elle! I can’t tell from your photos even when you point things out, which is a good thing, but I know exactly how you feel. That line ‘you don’t look sick’ really gets to me too because we aren’t missing a limb or in a wheelchair. It’s hard for people to understand. Having EDS myself, I really love Jess too, she has a great blog. I’ve been doing everything I can to try and raise awareness for EDS and try and help people with symptoms etc, which has gone well, but there’s so much more to… Read more »
As are you Lorna!
I did not know that you also struggle with EDS. Silents struggles can be annoying but can also be a good thing.
So long as our friends and families have a good understanding !
xo, Elle
This is gorgeous! Love your bag!
Have a wonderful Thursday!
http://www.jessicabroyles.com
Thanks Jessica,
Mother nature did all of the work here !
xo, Elle
Oh Elle! I know you’ve mentioned your autoimmune disease before, but to be honest, I had no idea of everything this illness entailed. You’re very brave and I admire your positive outlook on life. But then again, I think that’s the only way to go, as it could be a downward spirally mentally if you gave in to too much negativism. I think having an “invisible disease” must be difficult, constantly having to explain yourself. I’m glad to hear that you are well controlled, though, and that you are finding ways to keep the disease under control. Based on your… Read more »
that is very insightful about the downward spiral . Yes to Holland and CBD oil. There was a big story about its use in the NYtimes and many sources too. I hope it helps.
Love, Elle
Thanks for sharing some of the details of your situation. I knew about it generally and this helps fill in the picture. During the past few years, I’ve had some ailments emerge which first terrified me but now I simply live with them. I mean, what choice do we have? Best wishes to you.
I am sorry to hear that Ally. Truly, that is correct, we have no choice, but we can adjust our attitude and you have done my friend.
We all have something !
xo, Elle
HI Elle Since I got back recently, I am just getting to visiting. Thank you so much for the mention, you are obviously a favorite person of mine! It is hard, as I often used to get , you look great, or you don’t look sick remarks. I am not convinced my mom thinks I have an illness, yet the hundreds of records, pages of reports, would evently say so. Perhaps it is hard to see your child sick. I know it takes inner strength to keep moving, and live life. You are so right about the not knowing. That… Read more »
I wanted to add, I think so many diseases are invisable, unless it is a broken arm, or something physical you can see. I am so glad you are having things more managed. It is so important to have a doctor that beleives and listens to you!
jess xx
http://www.elegantydressedandstylish.com
Hi Elle, thank you for sharing. We understand the struggle of having to deal with an autoimmune disease and recognize your strength. In preparation for the holidays, we have put together a list of great gifts catered to autoimmune patients.
Link: https://drbonnie360.com/2018/12/19/13-unique-autoimmune-and-chronic-illness-gifts-for-the-holidays/
We encourage you to check it out! 🙂 #spooniestrong
I am intrigued ! Yes, please be well and thank you for reaching out!
xo, Elle