There is a truth that accompanies having a little-known disease that makes it even more difficult. Being alone. Let's look at that scenario and what it means for those of us who have lipedema, whether we have an official diagnosis or not.
You're sitting in front of the computer and realize something. That lady's picture or story you're staring at could be YOU. The odd hodgepodge of symptoms you've had for years start clicking into place one by one. You realize you're not crazy! Depending on your personality you may exhale a big sigh of relief, burst into tears, or do a happy dance...or maybe it's so overwhelming that you do all three. You can't wait to tell people. Finally, you have run across a real illness that actually explains all the weirdness.
But how many of your friends and family have ever heard of lipedema? None. What about that doctor you've gone to for a long time or the new one you sought out who was supposed to be more open-minded and not just tell you to eat less and lose the weight? Nope, that doc hasn't heard of it either. Or maybe you got lucky and the doctor didn't pat you on the head and tell you you're wrong but actually has heard the term. Does the doctor really know how to help you? Probably not. You go to some sort of therapist who is supposed to help. Usually that's a lymphedema therapist. Will they give you any guidance except for barely-there lymph drainage techniques that cost $1000 per hour and toss some ill-fitting compression your way? Hmmm...nope, not even these specially trained, most always very kind and lovely people, have much to offer you. You seek out other people in professions to help people...a chiropractor, a naturopath, a functional medical doctor, a dietician, a massage therapist. The list is endless and yet no one you find really KNOWS about lipedema enough to give you any guidance at all beyond what you learned from a stranger in a group on facebook after a 5-minute chat.
I'm not blaming any of these people or telling you there's no hope, but this is the reality most of us face. After months (or years) and several (or many) dollars spent, we are back where we started, except now we are out of options and don't know where to turn. Is there anywhere to turn? Yes, there is.
Those of us who are managing our lipedema have realized that while we need and depend on our support systems and loving family and friends to come alongside us, we are mostly in a place of figuring out what will help us on our own. I think that's when many of us feel stuck. We no longer trust our own instincts and knowledge of our own bodies. We are afraid after so many diets and programs and attempts at fixing this body that betrays us to make our own decisions for our own health. There must be someone out there who can just tell us what will fix this, right?
I am a health and wellness coach who guides women in their journeys and helps them figure out their own unique path, but my best advice is to know yourself. Dismiss those people who aren't in it for YOU. If your doctor doesn't know what lipedema is, you are free to move on without guilt or an explanation. If you're not mentally in a place to educate and convince the lymphedema therapist that lipedema is a separate and distinct disease that needs its own treatment, that's okay. If the diet the nutritionist put you on makes you feel like crap, you can walk away and put different things on your plate. If you want to stand on a vibration plate but dry brushing makes you cringe, then a professional who is in it for YOU will help you make that work.
Are there specific health issues that might prevent you from taking a certain supplement or trying a certain therapy? Of course! Besides that, though, YOU are in charge. If you don't yet have a diagnosis it doesn't mean you can't put on some compression or use a massage gun. If your doctor told you never to exercise but a hard and heavy sweaty workout makes you feel better and reduces your pain, then that's what you need to do. The honest truth is that you don't NEED an official diagnosis to do most everything you need to do to manage your lipedema. Women spend all their energy and time and money and exhaust their mental and emotional capacity just trying to get some health professional to say they have lipedema. Yes, it gives us validation and often a huge sense of vindication and relief, but by the time we actually find someone who will agree with us, don't we already know?
This is my point. Take control of your health. Do what resonates with you. Don't carry the burden of the entire medical community "needing" to know about lipedema if you just truly cannot. Take care of you. Read. Learn. Research. Cry. Pray. Listen to other women who have had success. Then take that step you're longing to take if someone would just say it's okay. You. You're the person who is in the position to give that permission to yourself. That first step isn't the same for everyone. But it's the most important step there is.
So call that specialist, or don't. Go on a strict diet, or maybe not. Exercise a lot more, or exercise a lot less. Be more active, or relax and breathe. Create a strict schedule, or free yourself from rules. Buy a cart full of new supplements, or choose one. We're all different. My best advice? Lipedema is hard. Stop striving to find THE answer or follow the exact plan someone else is following. Trust yourself to create your own path. Your body will thank you.