Lipedema & relationship

Some of us already experience it, yet many still long for it – a healthy relationship.

A relationship full of those perfect, close moments you’ll never forget, where you look into your partner’s eyes and know you’ve found your soul mate you fully trust and who backs you up, and who makes laugh at least once a day every day. In a healthy and happy partnership, you’ll feel beautiful and comfortable at any time or day. Because he loves you for who you are (Thank you Bridget Jones😊) And yet it is so true!

So what happens if life hits you like a truck and you are diagnosed with lipedema? What if that diagnosis turns your relationship upside down?

Here’s a story from one of our LIPOCURA® patients I’d like to share with you:

It’s Wednesday morning. Excited and maybe a little bit nervous, I sit at the reception desk on my own for the very first time. The docs are already in the house and waiting for their consultations to start…

“Ring ring ring,” the phone rings.

“Practice LIPOCURA®, Freyer. Good morning, how can I help you?” Me for the first time, all by myself.

A male voice answered me. Hm, slightly surprised and taken off-guard. But hey, I’ve got this. Taking a deep breath and waiting for him to continue.

“I’m calling about my wife. She has been suffering from grade II lipedema for some time now and I would like to make an appointment for her.”

The gentleman came straight to the point.

I was intrigued, but also a bit taken aback. For a very brief second, I thought about asking him to bring his wife to the phone to have her speak to me. But I decided that there must be a reason why he is calling and not her and I should just listen, which is part of my job.

He was so well informed about lipedema! It was absolutely thrilling to learn how much he get dived into the topic of lipedema and surgical treatment. He had done plenty of research before he had decided to call us, LIPOCURA® to ask for an appointment.

While we were speaking on the phone, I also noticed he was calming down his extremely nervous wife in the background. What a man! I was thrilled to witness how his affection and support released his wife’s tension.

He insisted on taking the first possible appointment right away, and, no matter when, and without any hesitation he was willing to take the 300 km drive to our practice to support his wife during her first consultation with one of our LipoDocs.

Once we settled the appointment, I sensed how relieved he and his wife were. I also was so touched by this wonderful first phone call during my first shift alone, I kept a big smile on my face for the rest of the day.

How can lipedema impact your relationship?

The diagnosis of lipedema initially throws not only the person affected but also their relatives into a completely new situation, which can be both physically and emotionally draining.

In the case of lipedema, the physical condition changes within a short period of time. Sometimes so suddenly, that there is hardly any time to adjust the mind to the body’s development. Let alone life and relationships.

Suddenly, there is pain, touching and caressing can become painful or at a minimum, uncomfortable. Joints swell and women can become physically quite limited. Not to be forgotten the quick and easy development of bruises or skin irritations, which sometimes can be quite visible to others. And finally, the uncontrollable weight gain without any prospect of long-term improvement through exercising or through diets can be a shattering to a woman’s self-confidence and a burden to family and friends.

Life isn’t anymore as it used to be. The formerly fun-loving and motivated partner may no longer be in the state of mind as before, sometimes may even deviate quite a bit in terms of personality. The resulting challenges can be tough on relationships.

You may not know how your partner reacts in case you have been recently diagnosed with diagnosis, but at a minimum, make sure you speak about your feelings, your physical and emotional discomfort with your partner. Make sure you find the support you need in your relationship but also beyond the partnership, with your friends, at work, other lipedema patients. Maybe your partner wouldn’t make doctor’s appointments for you like the one who called me, but make sure you feel and get the support you both need. Lipedema is not only new to you, it is also new to your partner, so plenty of research and learnings need to be done.

Now coming back to my experience with the couple on my first day alone at the front desk:

Less than 3 weeks later, the time had come – the lipedema patient was standing in front of me at the reception desk together with her partner, who was obviously very well prepared. With a folder full of documents, her partner looked at my colleague and me euphorically, ready to pull out anything we’d ask for.

I whispered to my colleague that this was the gentleman I had spoken a few weeks ago.

She grinned at me and said:

“Well, go ahead”.

I introduced myself to the gentleman and immediately pointed out to him that I had had the telephone conversation with him a few weeks ago. They were so excited about the consultation and could hardly wait for it to finally start. Eventually, the doctor called both into the consultation room…

How can partners and family support lipedema treatment?

Given lipedema treatment whether surgical or conservative, the continuous wearing of compression garments and life-long appointments with the physio therapists require long-term compassion and understanding. Obviously, this ain’t an easy ride, neither for the partnership nor for the person diagnosed with lipedema.

In the case of liposuction (med. liposuction) the healing process puts the patient physically out of action for a certain time.

So beyond providing emotional support, the partner and / or relatives have to often take over the lipedema patient’s duties at home, in the garden and when running errands.

This creates a psychological and physical strain – especially for the patient, and possibly also for the partner. Many partners and relatives feel obliged to be there 24/7, yet, sometimes, they miss the fine line between helpfulness and self-respect.

How do I and my partner deal with the issue of lipedema?

Mutual understanding is of great importance. Listening is important. Talking is important. And sometimes, silence is important. Because even though you are in this together, you also need to allow each other some space for oneself. With a chronic disease like lipedema there is no easy way out, so better prepare for the long run rather than a short sprint together. In the end, you’ll become stronger as a couple and as a family, you’ve learned to listen and to respect each other in new ways.  And ups and downs are part of the lifelong story of lipedema.

How can you help your partner to understand the situation?

Involve your partner, let your partner be a part of your personal journey. For example, low carb and ketogenic diets are recommended for lipedema. With regular nice and romantic cooking evenings, you can combine romantic date nights with new and healthy recipes.
Make sure to communicate openly and honestly how your feeling. When you are too tired to hit the dance floor, make sure you explain why, use facts and show your swollen legs.

I was so fascinated that I went into mental absences for a brief moment and realized for the first time that it really is a privilege to survive the health journey of lipedema together with your partner and/or family members.

This is how my inspiring and touching experience with the lovely couple came to an end:
… I walked over the photo room, when I opened the door the patient happily looked at me, smiling all over her face.  Anytime I take pictures, it is of great importance to me to learn more about the patients. The nice and extremely valuable conversations that I sometimes experience while photographing the affected areas enrich my work and warm my heart.

While standing on the podium, she was still somewhat amazed by the promising consultation and thanked me several times. Even though it wasn’t me who did the job here – it was her and her partner who overcame their sorrows and took the first step making an appointment.

I thanked her as well and told her that it was really nice to see how engaged and interested her partner was in supporting her.

She grinned, nodded, and paused. Shortly after, she told me that without him, she would never have taken dared to take this road to recovery. I learned that she had already made several appointments previously with us, but had cancelled them several times. She simply lacked the confidence. Since she had openly communicated it with her partner, he supported her wherever he could, and for that she was more than grateful to him. Without adding anything to that, I smiled at her and continued taking pictures.

After she got dressed again and picked up her partner from the waiting room, they walked out of the office hand in hand together with their LIPOCURA® folder.

What a beautiful day.