When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes? Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention? Most importantly, what can you do to still feel beautiful?
Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:
- Using attractive scarves or hats to cover thinning hair or bald spots
- Experimenting with different cosmetics to see what works best
- Treating yourself to a spa manicure and pedicure as a pick-me-up
- Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
- Soaking in a scented Epsom salt bath to ease pain and relax
- Consulting with a hair stylist about better styles for thinning hair
- Using gentle, non-drying facial cleansers and lotions
- Switching to an electric razor to improve ease and safety
- Donating your hair to Locks of Love to put a feel-good spin on it
Have you discovered other tricks to help you deal with a changing appearance? Join this ongoing discussion in our forum or share your experiences in the comments section.
having an illness to share is fine but what I need badly is help with treatment for porhyria badly. just some questions
Hi Jean,
Have you joined the PatientsLikeMe.com community? There aren’t too many with porphyria (22), but you can reach out to see what others are trying.
http://www.patientslikeme.com/conditions/727-acute-intermittent-porphyria/treatments
Let me know if you have any questions about getting oriented to the site, I’m here to help.
Best wishes,
Liz
I feel awful when I see pictures of me 15yrs ago. It’s not age changes, it’s changes from prednisone! When my grandchildren see pictures of me ten or fifteen years ago, their remarks are, THAT’S GRANDMA? And I feel the same way when I look at pictures before I got sick.
Some of the kids have videos where I’m chasing them or picking them up, they can’t even
Believe it’s me. I remember and it’s painful and then I start feeling sorry for myself. That doesn’t
Do anyone any good.
But we need to think about who we have become. And who my children have become because
Of my illness. I have seven auto-immune diseases. The first one was Fibromyalgia, which I’ve
Had since I was a teen-ager. Then MS started in my early 50s, although I’d had it longer than that
But that was when it was diagnosed,. After that, the worst one of all, somehow I got Pulmonary
Fibrosis which is fatal, no cure and not really much in the way of treatment either. There are several others too. The reason I mention these is because I have had to take more medication for
the various diseases. Many of those cause weight gain, especially the prednisone. I weigh about
35lbs. More than I used to and that’s after losing 40lbs over the last year! My face is round and
Puffy. It’s an awful change, but my husband still tells me I’m beautiful!
I try to dress in clothes that will compliment my figure such as it is. Keep my hair, nails done. Now,
That I can’t see very well, I get my eyebrows waxed , upper lip, and any thing else that needs to be done.
The most important part to all of this is to pay attention to inner growth which is the most important
Part of us anyway. I have grown in my faith and trust in God and in compassion for others, I hope.
I hate what these autoimmune diseases have done to me and my health. This is not what I envisioned for my life at all.
While I do wish to be seen as attractive, I would much rather someone appreciate me for a kind, forgiving heart.