By Christina Routon
Hi, friend! Yes, it's good to see you too. How are you? It's been awhile, hasn't it.
Let me order my chicken salad - no croutons, please - and my unsweetened tea and we'll visit for a while. I want to hear all about your job, your friends, all the exciting things in your life. And I'm sure you want to hear about mine.
How are my legs? They're fine, thanks. Yes, I still have lipedema. Yes, I'm still wearing compression hose. Nope, no cure, but research is beginning, awareness is growing.
Am I eating organic?
Do I know what the dirty dozen list is?
Have I given up dairy?
Have I given up sugar?
Have I given up all grains, not just wheat?
Have I tried Paleo / Weight Watchers / Jenny Craig / HCG / Medifast / and so on?
Have I given up soy?
Have I given up nightshades?
Because if I do what you tell me to do (even though you're not a doctor / nutritionist / or even remotely qualified on the subject of diet, exercise and health) I can beat this thing?
Whoa, there, friend. Stop and take a breath. Yes, please stop.
I've lived with this diagnosis since 2012. I've had this disorder since I was in my early teens. Let me assure you, since you're so concerned for my health, that I've tried every diet known to man - and some I made up - over most of my adult years. The two years before my diagnosis I lived on chicken and broccoli and was at the gym six days a week. It took me two years to lose 60 pounds. That's when I knew something was wrong, and that's when I started looking for answers.
Now, friend, I'm not saying this to justify anything about my diagnosis or my life. I'm just telling you, right now, please don't go there with me again. Because what I also carried with me for most of my life is guilt. And shame. And blame. From family, doctors, strangers around me and even well-meaning friends like you.
I have lipedema, and it's a real condition and it's not going away by giving up dairy and grains and nightshades. If it were that simple I'd be cured by now.
So, friend, I appreciate your concern about my health, but what I eat or don't eat isn't up for discussion or debate.
No, I don't want your help. Not if your help is diet advice on a condition you know nothing about.
What do I want from you? I want you to be my friend. I want you to love me. I want you to support me. I want you to listen to my crazy adventures in this life and I want to hear yours. I want you to be understanding if I need to walk a bit slower or rest more often than you. I want to enjoy lunch and ooh and ahh over the baby's pictures on your phone. I want you to cry with me when life sucks and laugh with me when life is wonderful. I want to do the same with you. I want to do life together.
Just be my friend.
Wonderful post. Have just shared this on a support forum for people with Crohn's and colitis as we suffer this infuriating "advice" from people all of the time
ReplyDeleteI just got my diagnosis last week..at age 59!! I have been living with this since I was 13 and have also tried every diet and exercise known to mankind. I am going to do three months of CDT therapy and then follow that with Dr. David Amron doing Liposuction. I will get my fat sucked away without apology to those who "know" that the only cure is diet and exercise. Whatever works for you go for it..and leave the rest of us to pursue this however we see fit.
ReplyDelete