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Ashley Boynes

Living (Well!) With IllnessSyndicate content

I’m 25 years old and I have health conditions. I was recently diagnosed with Celiac Disease, even though the ‘average’ onset of CD is more commonly diagnosed in women over the age of 40. Symptoms of Rheumatoid Arthritis typically begin after the age of 40; I was diagnosed with Juvenile Rheumatoid Arthritis, or JRA, at age 11. This blog is about my personal struggles. Living with invisible autoimmune conditions can be discouraging at times – but you don’t have to go through it alone. Here, I will share my personal stories and thoughts, as well as news on medical breakthroughs and ways to live well while coping with illness. I’m also here to encourage dialogue about living a happy, normal life – despite feeling sick at times. Like I said, I’m 25 years old and have health conditions. But they don’t have me.

Living (Well!) With Illness | 08/07/2009 11:00 pm

No, Not the Shoes!

By Ashley Boynes
Ashley Boynes
Here’s the thing: I suffer from a third disease. This condition is called "Chronic Shoe Lust." Shoes are my sanctuary. And here’s my frustration: I don’t want to give up my cute shoes.

Sometimes, it is so hard to be reasonable. It can be especially difficult when you have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.

I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg. And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing heels, wedges, pointy-toed pumps and other variations of cute shoes.

Now, I’m a logical young woman. I follow my gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and don’t take on more than I can handle.

But I refuse to give up wearing cute shoes. Cute, painful, inconvenient shoes.

I know, I know. I’m "going to kill myself walking in those things." It’s "no wonder" I limp. I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.

Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of "it’s just the shoes," rather than a chronic illness with no end in sight. I also think it’s my pride. I want to hold on to any sense of normalcy I can since sometimes my life isn’t exactly that of a "normal" 25-year-old. Do I have to give up something that, as silly as it is, makes me happy?

I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, "regular" baked goods and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?

I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!

What do you think, reader? What have you sacrificed because of a health condition? Do you ever "cheat" and stray from what your doctor says, like I do with my shoes?

22 Reader Comments (so far…) Sign In or Register to comment

Christine Cline
1 know exactly what you are say1ng. Any way you sl1ce 1t sacr1f1ce 1s sacr1f1ce. And enough 1s enough.
By Christine Cline on 08/10/2009 12:02 pm
Rachele Brown

The invisible diseases are the best, aren’t they???

I’m 33 and was diagnosed with Chronic Fatigue Syndrome (after nine months of symptoms) in May 2007.  After almost three years of being forced to sacrifice (food, activities, time with my kids, any hope of a career) I completely know where you’re coming from.  I usually end up doing what I want and paying for it later - which isn’t necessarily a responsible life philosophy, but sometimes it’s worth the longer period of recovery to really live in those few minutes of ‘cheating’.  This is why I try to jump on the trampoline with my three kids for a few minutes every couple of days - it takes me hours to get over it, but the grins on their faces when I climb on are completely worth it.

If high heels are what it takes to keep you in control of your life, then it’s worth it!!!

By Rachele Brown on 08/10/2009 6:54 pm
elaine s
You are so  young!  You should wear the shoes you love until you just plain can’t anymore.  Your body, especially your back and hips, will let you know when it’s just not worth it anymore.  Good luck to you!  Thank you for your great colulmn. 
By elaine s on 08/11/2009 4:56 pm
Carolyn K
While I totally understand about the cute shoes - I also should give them up, but haven’t, I don’t understand about the torn meniscus. I had arthroscopy to fix mine, is there some reason you can’t have yours fixed? While it wouldn’t solve all of your problems, it would certainly go a long way toward aleviating the problem you have with that knee.
By Carolyn K on 08/12/2009 3:47 pm
yemisi ajibose
i totally understand where you are coming from, i am 28 also suffering from arthritis, and i have vehemently refused to give up my shoes even when i can barely walk…but there’s a feeling i get that i cant describe when i step into those killer heels that i am not willing to trade yet… now i know i am not alone…
By yemisi ajibose on 08/13/2009 8:27 am
Connie Turner

Dear Ashley,

I have Sjogrens disease a similar autoimmune disease like RA.  I do understand how you feel having to give up so much and stick to strict rules for living.  Anyone who is a "certain age" knows about having to give up things because of pain/disability.  I think you should enjoy those cute shoes as long as you can.

Connie Turner

By Connie Turner on 08/18/2009 10:37 am
Jay T

Ashley,

I have a few things I do that maybe I shouldn’t…but I really wanted to say how amazingly well you expressed your issues vs your wants and needs. Obviously I dont wear heels but the story hit home in other ways and I don’t feel so bad about the things I do that put a smile on my face. I have Celiac disease as well and it has caused some other serious issues where I too feel the right to shrug off expert advice and do what pleases me.

And I don’t want to embarrass you but I find too often that people don’t express how they see things, but today I am going to tell you what I see. There is no ulterior motive or fluff here, its just the way i felt after reading your article.

What I see is a beautiful and very intelligent woman who wont let Celiac Disease or RA take away the pleasures that life has to offer. So even though your Celiac and your RA are things that nobody would want, just know that your passion and success for writing, your stong will and ability to find situations where you aren’t any different than anyone else, and you somehow are able to look as if you are as fit as an olympic athlete even though you can’t exercise like one, are things that most people see in you.  We don’t look at you and think, she must be in pain…we look and say to ourselves, she is amazing!

By Jay T on 08/25/2009 10:19 am