01.10.2024

Lipedema Column – Part 6

Lipedema and Social Media: Curse or Blessing?

Instagram, TikTok, and Facebook have become indispensable today. They are an integral part of our lives, and we gather all our information from the internet, seek inspiration, and use it for communication. For those of us affected by lipedema, social media is also a valuable resource. It offers support from others dealing with the condition, provides useful tips, and helps us connect with other lipedema sufferers. I found out through Instagram that I am not alone in living with my chronic illness, and that was very important for me.

However, at the same time, social media also poses risks, especially for self-esteem and mental health.

Social Media

Here, people with lipedema have a space where they feel seen and understood. By interacting with others who are affected, the feeling of loneliness is reduced, and you no longer feel as helpless and abandoned. There are Facebook groups where people share their experiences with surgeries, support groups where we can find helpful tips, and individuals who truly understand what it's like to live with lipedema.

There are now many lipedema accounts on Instagram, and each of these women has her own way of dealing with the condition and shares it. This helps many cope better with lipedema. There are accounts that show you what lipedema really looks like and that, despite this condition, it’s possible to lead an active and positive life. Or accounts that offer dietary tips and share life after liposuction. This type of visibility can help many affected individuals feel more comfortable again, assist in making decisions, and help regain confidence with and despite lipedema.

Unfortunately, there’s also another side... the downsides of social media

Despite these many positive aspects, there are also negative sides. Constant exposure to idealized bodies puts us women with lipedema under pressure. We see daily how others look, without a chronic illness. Depending on how your algorithm on platforms like Instagram and TikTok is set, you may be bombarded with perfectly staged, slim bodies that are far from the reality of most people.

Comparing yourself to these images can lead us, women with lipedema, to devalue ourselves and our bodies, further weakening an already fragile self-esteem. There’s a danger that we might believe something is “wrong” with us, even though the real issue is the lack of awareness about the disease lipedema and its specific needs.

A little tip

To take advantage of the positive aspects of social media without being negatively influenced, it's important to be mindful and critical of your own behavior.

Constant comparison with idealized bodies or following accounts that don’t benefit you can negatively impact your self-image in the long run. Therefore, it’s essential to regularly review your feed and follow only those who truly inspire you, provide a realistic view, and, for example, also have lipedema.

If you’d like, you can ask yourself these three questions to find out whether your media consumption is currently doing you good or is more of a burden:

Three questions for reflection

  1. Do you often compare yourself to pictures/videos of others on social media and feel worse afterward?
  2. Are the accounts you follow realistic, with a supportive approach, or do they pressure you to conform to a certain ideal?
  3. Do you feel inspired and supported after using social media, or more frustrated and dissatisfied with yourself?

It’s important to question this regularly, so you can get the best out of social media. You should benefit from it and not feel bad about it. Take good care of yourself and don’t lose yourself in an online world where everything often seems so perfect.

All the best for you,

Talia