Hidradenitis Suppurativa, Identity & Self-Labelling

hidradenitis suppurativa mental health

When you are diagnosed with a chronic illness like HS, you may feel lots of emotions. You might feel relieved that you know what condition you have. Or sad for the limitations that illness might put on you. You live with the disease and with various routines. It appears the longer you have it, the more part of you it becomes.

There is a branch of sociology called Symbolic Interactionism. Symbolic Interaction deals with symbols of communication like language. It also explains how we form some of our identity from contact with other people. So at least part of your identity comes from how others see you.

Of course, the labels that others attach to you like “sick” or “disabled” can become internalised. Meaning we take them on and the roles that come with them. Research shows that the extent labels determine your identity impacts your well-being.

HS will always be part of you. But hopefully, this post will show that it’s not always a bad thing. And in some ways, it can even help you to cope with your HS.

What’s in a Name?

hidradenitis name

Identity is the thought patterns we have about ourselves and our place in the world. If somebody asks you to describe yourself, what you say is the centre of your identity. Most people describe their job or roles as parents. Others might mention interests or things they enjoy doing.

In some contexts, we mention our chronic illness or disability. We debate about the language around disability that’s used in society. Most people know it’s not okay to call another person after their medical condition. We also know that words are associated with stigma. But what about the names we give ourselves?

There is an idea in social science called illness identity. Illness identity is how much a person considers their disability to be part of them. Disability can be limiting, as we know. But your ability to actively take part in your life is essential to your self-esteem. And thus, your identity.

Acceptance

accepting hidradenitis suppurativa diagnosis

According to a 2019 paper within the idea of illness identity is a framework of four states. The four states refer to the degree to which a person’s disease impacts their sense of self.

  1. Engulfment
  2. Rejection
  3. Acceptance
  4. Enrichment

Of the four styles, acceptance has the most benefits. People who accept their illness as part of them don’t allow it to take them over, unlike engulfment. But they also don’t reject their illness as part of them. They recognise that it doesn’t define them as a person. It’s only one part of who they are.

As a result, those who accept their illness have fewer symptoms. They also report less anxiety and depression. As well as that they practice better self-care. Rejection and enrichment produced the most symptoms. Enrichment because the disease becomes such a big part of how the person sees the world.

Ownership

hidradenitis suppurativa symptom tracker

Social scientist W. Karnilowicz, Victoria University, wrote a paper about his own experience of prostate cancer. In that paper, he advocates psychological ownership. This means that you think of your disease as something you have. Rather than something you are.

Karnilowicz describes after his diagnosis, learning everything he could about the condition. Taking responsibility for his own recovery gave him a sense of control. Which, in turn, helped him keep his sense of self after his body had changed for the worse. Not only that he said that he had a more equal relationship with his medical team.

As part of taking ownership, he suggests patients keep a record of their own experiences. Medical records only give medical facts. They can’t capture the range of emotion you experience or your daily routines. Keeping your own record of your journey can help you gain some perspective. As well as document what you learn.

Self-Labelling

respect yourself hidradenitis suppurativa

Karnilowicz also talks about the labels we attach to ourselves and others. He advocates using phrases like, “I have cancer” or “I have HS.” Calling yourself an HS sufferer is like defining yourself as one thing. It reduces your life to an illness.

Labels can be stigmatising. They encourage stereotyping and don’t consider the different experiences of disability. Resulting in lower quality of care and quality of life.

This is also true of the names we give ourselves. We spoke before about self -talk. If you missed that you can read it here. You must talk to yourself with respect. Your mental health will benefit from recognising other aspects of your life.

Self-Worth

know your self worth hidradenitis suppurativa

Ultimately what you call yourself is up to you. Make sure that your labels help you flourish and that you are not selling yourself short. You are not your diagnosis. In truth, you are no one thing. Parts of our identity come from our interactions with other people. But you can choose who you are. And you are worth more than any label.

Bodies change and with them ideas about us. None more so than with HS. Not only is HS progressive, we are prone to other conditions like diabetes and PCOS. As well as that, surgery and other medical treatment can produce temporary problems. But we can also have periods of remission.

HS is a journey that requires resilience and a strong sense of self to travel. So, when you are talking about yourself, don’t forget to mention all the other things you do. And all you love and enjoy. They are what keep you going.

About The Author

Shannon hidradenitis suppurativa patient

Shannon Sweeney is MA student in Community Research & Journalism from Ireland. She is also living with HS and has a keen interest in lifestyle, wellbeing and hidradenitis suppurativa.

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