3 Challenges of Being an Illness Advocate

Rhiann Johns

Is anyone out there?

One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?

I am too tired to write

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

The challenge of educating those who are well

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.

And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:

“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner

“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist

“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others

“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.

And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!

Rhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.

She blogs about it frequently at My Brain Lesion and Me

Comments

  1. Andrew Galloway says

    It’s an up-hill struggle Rhiann. I know, I have a chronic condition myself. You are challenging deeply hidden fears within people. In order to survive in a hostile world human beings have developed many psychological defence mechanisms, one of which is denial. Most people live with core delusions about human existence, unfortunately often originated and perpetuated by various religions. One being that “all is well with the world and God is in his heaven”, another that illness is a rare occurrence and that somehow people are themselves to blame for their own illness – this was a common belief in medieval times – and if you scratch the surface of modern society you will still find it lurking – as you say, people tell you “Oh it’s all in your mind”, and “oh, you should be better by now”. Fundamentally, people don’t want to know about your illness because it reminds them that they are vulnerable to chronic illness too. People don’t want to hear this. They want to believe that the saintly doctors and nurses will cure them of anything, just like on the television shows. The reality of chronic, incurable illness is a bitter pill for them to swallow.

  2. Tammy says

    It’s very frustrating for me to have people, even the doctor say to me, “Well at least it’s not cancer.” I am in pain every single day. It went from me thinking that things will get better tomorrow, then hoping things will get better tomorrow and I will have a better day, and now most days I don’t even want to wake up because I already know what my day will be like. Im taking all this medication and trying to follow two different kinds of diets but make them work together because I have lost so much weight. That’s another thing people always tend to say, have you tried eating this or that. My husband thinks someday I will be sitting down eating cheeseburgers and deep-fried French fries with him, but I won’t. There is no cure for some of my conditions, and eating junk like that would make things worse for the rest of my problems. Btw, I never ate at fast food chains before I was sick except for an occasional milkshake, so what he was referring to was homecooked burgers and homemade fries in a deep fryer. I know you write this blog awhile ago, but I was searching for information about invisible illnesses and stumbled upon it. I thank you for taking the time and effort to write your blog. I hope you are doing well. Thank you for reading my response.

  3. Lisa says

    I want to start a blog for others with painful invisible illness. I feel as though I keep searching for brutally honest voices out there and I can’t find any. Perhaps I don’t look hard enough or in the right places but that only means I need to provide what I am seeking. I want to create a place where readers can come and delight in the fact that there is another young-and-healthy-looking writer who understands the sick humor and often-seen-as twisted views and intellect of someone who has been living with chronic invisible illness. It is a factor in my life that formed a great part of my character and I need others to support me and to understand or relate. If I can’t find what I’m looking for, there are most likey others out there who can’t find it either. I am 17 and off to college next fall. Is there any way you can advise me on how to go about advocacy? I need all the help and advice I can aquire. Thank you so much.
    Lisa

    • admin says

      Hi, Lisa, the audience is out there. Part of the challenge is making it for any disease, rather than just one. People tend to search online for people who have their same illness. I also recommend checking out chronicbabe.com . jenni has a younger audience. If you go to our Pinterest board here http://pinterest.com/restministries there are also boards under “Work, College and Career” and “Teens with illness.” These may have some resources to connect with others and then gain a following.

      Be sure to see how your audience connects online already. You may find fewer young people in Facebook, but more in Tumblr or Instagram. hope this helps!

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