Dea's journey with lipedema

Hello, I'm Dea, I'm 28 years old and have been diagnosed with stage 2 type 4 lipeedema since 2020.

My lower body has always been more than my upper body and from one day to the next my life changed. I am a professional hairdresser and it all started after the Corona period!

The businesses reopened after a 3-month break, including our hair salon. I started working again and went from 0 to 200 in one day. From one day to the next, my foot bones became extremely swollen and there was a hell of a pain. I could not walk, stand up or make any other movement. I dragged myself to work, my boss sent me home, and from there it was on to the doctors... Starting with the family doctor: suspicion of thrombosis, injection and referral to the hospital.

When I arrived at the hospital, I was diagnosed with localized lymphedema on both sides. From then on, I waited for months, going from doctor to doctor. I was always sent away with the diagnosis that it was nothing and that they couldn't explain the symptoms! 4 months before my appointment with the phlebologist (who made the diagnosis), I saw an angiologist who said I didn't have lipoedema. However, she prescribed compression and while working with the medical supply store, my counselor recommended that I see a phlebologist. She said it would look a lot like lipoedema. While I was looking for someone to see, the pain, discomfort and visual changes increased significantly. I found a phlebologist with a 4 month waiting period. During this time, I did a lot of reading and my suspicion that I had lipoedema became more and more confirmed!

The appointment was coming up, I was very excited. I can't put my feelings into words, thoughts in my head that I had never known before. What if I have this disease? What will happen then? What will my future look like? What will my life be like with this disease? What kind of impairments will I have? Questions upon questions. Then came the doctor's appointment. The doctor examined me, took measurements and afterwards came the evaluation with a comprehensive explanation.

He explained to me that I had stage 2 type 4 lipedema (i.e. all parts of the body affected) and that nothing could be done about it except for surgery, which is only covered by health insurance in stage 3!

A world collapsed for me. All the questions I actually had no longer occurred to me at that moment. I didn't know whether I should be relieved to have certainty or cry because it was confirmed.

I fought back tears, asked the 2-3 questions I had just remembered, and tearfully said goodbye. My boyfriend met me in the waiting room and suspected that something was wrong. I told him everything and burst into tears! I fell into a deep hole for months, asking myself: What if I get even fatter? What if my boyfriend stopped thinking I was beautiful? I didn't think I could go anywhere dressed lightly, I couldn't undress in front of my boyfriend. I asked myself, "What if the pain gets worse? What if I can't move at all?

But there was also a time of hope and acceptance!

I have accepted it now. Unfortunately, I had to change my job because I could no longer physically be a hairdresser, and my impairments were getting worse. I can't do anything without compression, but I'm not giving up. We are in the middle of planning a child and I hope that it won't cause another relapse. But I'm confident and looking forward to what's to come, even though it's often very difficult to cope with the impairments and the visual aspect. Especially since many authorities etc. put a lot of obstacles in the way of those affected, which unfortunately also makes you angry!

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