Wednesday, January 21, 2015

Mental Health and Severe Lipedema

Conditions associated with lipedema
 Depression and anxiety are very common in people with lipedema for many reasons including the lengthy time to diagnosis, repeated counseling on diet and exercise by the healthcare community when neither is particularly effective and because of the massive and sometimes rapid body metamorphosis over a lifetime. In one clinic, women with lipedema were found to be more depressed than patients with paralysis112

What happens to someone's mind when they try to lose weight and fail for years and society looks at them with disgust and tell them it is their fault?

What happens to someone's mind when even their own family may reject them for being severely obese for years and call them a "loser" and a "bum" and a stain on society? Even the loving ones will give advice and cluck over your rapidly expanding body while the mean ones will throw the party invitations in the trash and keep you away from the younger members of the family as a "bad example."

What happens to someone's mind when you are told over and over to do things that simply do not work, and told that you are a liar even though you are doing them?

What happens to someone's mind when you are made to feel guilt for every little thing you eat and you cannot like a normal person really enjoy food and inside is always that little voice telling you that you are "bad" for eating anything at all?

What happens to someone's mind when your body swells and explodes into "lobes" and you fight deadly infections which can pop up in 20 minutes time that put you in the hospital over and over, and you are told it is all your fault, and it would be fixed if only you would lose weight?

What happens to someone's mind when you try to tell doctors, my body is swelling up every time I sit up and I have to lay down for hours a day to keep from getting worse and they do not believe you or blame it on your obesity? What happens then when you talk about the leg pain that never ends and they think you are a hypochondriac or simply not exercising enough and that is why your legs hurt?

What happens to someone's mind when the price of all this is severe poverty, and a life that has been bombed out like a crater?

Many bad things can happen to a person's mind when the world is against you and you feel your body is against you too. Your own body becomes an enemy when it comes to lipedema. I hated my body for years more often then not while I attempt to be more forgiving now.  It seems to do things that scare me on a daily basis. Remember you just don't have the swelling and the fat cells increased in size, and the lipomas, you get pain, fatigue, food allergies and other endocrine problems in the case of many lippy.

When I had my weight gain of over 350-400lbs, I nearly had a nervous breakdown.  The only reason I didn't is I put myself into massive counseling, art therapy and depression support groups. The Chicago mental health care system was the prop that kept me out of the mental hospitals.  However doing all this, a major piece of the puzzle was missing to us all. The less understanding  counselors saw it as a non-admitted eating disorder or the more amendable ones went along with my theory of having a pituitary tumor or other endocrine problems. Many later ones knew something was wrong and supported my medical quest by the late 90s.

I know it affected me very badly on a mental basis. I had already been sick for years with my bad lungs and struggling in poverty and with this added on it was more then any human being could take. I went from fat normal to a spectacle in a matter of months.  No one could tell me what was wrong. I had gone from already midsized to the very extreme of human existence. I remember those days, I felt cursed and as if I had woke up in hell. The Stephen King book "Thinner"  was the opposite of what happened to me!

While it took me 17 years I finally got some help, but one thing I am coping with lately is dealing with the reality that lipedema is not a curable disease. One thing about me, both legs were growing in size every year. I did fear the day coming where I could not walk because the lobes were growing so huge on the worse leg. At least the treatments will help arrest this, and I shrunk my legs down, but it is scary to face a progressive disorder with no cure. I do believe I could have possible Dercum's too given my body-wide lipomas, lung problems and growing deafness but even just getting officially diagnosed with Lipedema Stage IV was hard enough.

Lipedema is a very disfiguring disease. This impacts many lippys. Being fat alone is known to cause enough trouble, in a fat hating society. My legs and body are extremely lumpy, I remember being worried at a very young age about this.  Facially I am not ugly and actually good looking from the head up, but body-wise, it's scary. I am not "shaped" like many fat women either and remember this being commented on during my severe weight gain by doctors and others. 400lb weight gains are not unknown in lipedema. Other severe lippys have told stories of the same things happening to them.

It seems to me that depression is a given with these things happening to a woman. I have been grieving a lot of losses this year. While I was freed of some of the self-blame, I had to face facts that my poor health from lipedema and other conditions has given me a far harder life. For an Aspie processing all of this and having a life that deviates so much from the norm, gives one a far harder challenge. There is no book out there talking about anyone who has had a life like me. What does a person do? How do you keep from going mad? I ran to God to keep from totally losing it. There is no script for this one.

I believe there needs to be more mental health care and support for those with lipedema. Some of these issues need dealt with. Many lippys are suffering for years without diagnosis. Many are succumbing to depression. I saw one presentation written about online that detailed the extremely high lipedema suicide rate, that deeply concerns me!

Women with severe lipedema are going through something very few people could imagine and it is intertwined with the most discriminated against condition on planet earth.

Many of us need counseling that can be direct with coping with this disorder and emotional support. Too many suffer in silence. This is a chronic illness that can bring severe loss to someone's life. It did mine and I had many other challenges to go along with it.  Many of us need counselors that can help us deal with our medical problems and gain more understanding of how to cope with life and living a better life with these extreme challenges.

See: My Emotions Dealing With the Lipedema Diagnosis


  1. Exactly true. Thank you for telling the truth. It can be even worse for the woman with lipoedema when/if psycho-/sociopaths are in her life. The fact any of us come out close to any sanity is a miracle of miracles.

    1. Thanks Daphne. Yes there are a lot of issues. I think the lipedemics with supportive FOOs fare a lot better then ones who have sociopaths and narcs surrounding them. The irony of the illness is that trauma and abuse worsens it. I agree about the fact of us coming close to any sanity being a miracle.

  2. Thank you for this post...i searched for lipedema suicide for probably obvious reasons...i think i have stage iv as well and am having a frustrating time getting a diagnosis. I hope a diagnosis will change my primary care provider attitude toward me but idk. God bless you and your blog it helps me so much tonight to know at least I'm not alone with lipedema and grief/depression

    1. Sorry you are doing so badly. I hope you can reach out to a counselor or someone in your community. Email me too if you need to: A diagnosis did change my life as far as the medicos were concerned. A charge nurse even begged me to go to Mayo that's what hours of observation at home got me before I was diagnosed. Go to a cancer center in your region and find a MLD, they can start you on path to diagnosis with doctors backing it up:

      This disease can be a horrible one and is progressive. The emotional factors of it can be very very difficult. I have struggled with depression a long time. I have had to go to counselors and belong to a support group for depression. I hope you can reach out too, there are people out there who will understand.

  3. Well said. You brought up many important issues facing women in the lipedema community.

  4. Thank you for sharing. If one more person tells me I have such a pretty face but.... I too, am stage IV and very close to losing my mobility. I have the diagnosis from a Vascular Surgeon but in Canada the medical community hardly recognizes it. Sometimes I continue to beat on myself for having Lipedema. Thank you for the reminder that I need to be gentle with myself and get the support that I need. I really needed to see you post. Hugs and thanks again!

    1. Hi Mary, thanks for posting. Oh I have been told I have a pretty face too, always makes me cringe. Sorry that the medical community hardly recognizes Lipedema in Canada I hope that changes soon. Yes do not beat yourself up. I know we all have gotten far too much shame and blame, and need to be kind to ourselves. Take care. :)