Stigma and Lack of Knowledge - Hints and Tips to Cope

Good morning my lovelies!

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I hope you're all having a good day, today's post is something that I, myself, and many other people with rare conditions have struggled with over the years. I'm aware that there are parents of people with POMC who have struggled with this also and this is a problem that truly must be tackled. This problem is stigma.

 Throughout this post I  will be discussing stigma and a lack of understanding those with genetic obesity diseases often face; I am, however, fully aware that stigma is not only attached to genetic obesity conditions but a countless number of diseases, disorders and other illnesses people suffer from, I'll be discussing genetic obesity on the whole as that is what I know best but this information and advice can be applied to whatever impairment or illness someone may suffer from that doesn't get the understanding it requires.

Over the years I have found that it's often been very difficult to get the support needed from friends, schools, medical professionals and even family because there is a huge stigma against those who are obese, just as there is with people who have, say, dermatology conditions, people often see such ailments as contagious when they are far from that. In terms of obesity however, we live in a society with strict rules on what is and is not acceptable for weight and body size, often times people look at me (using myself as an example as I have no right to assume about other's experience) as if my body is doing them wrong in some way, they look at me as if I am offending them with the size of my jeans, as if I have personally insulted them by me being fat. I could discuss society and social stigma around obesity for hours but i shan't bore you with that just yet; no, what I will say is that because many people do tend to look at an obese person as somebody who overeats, is too lazy to get out of bed and point blank refuses any healthy lifestyle activity it can be extremely difficult to get people to understand that there can be a real, genuine medical condition behind the weight. I'm aware people with PCOS, leptin receptor deficiency, Prader-Willi Syndrome and many more conditions have been faces with a great lack of understanding in school, when schools were not fully supportive of obesity related illnesses due to their underlying medical conditions, meaning their school lives were made much more difficult; this is absolutely the case for me also as my primary and secondary school both took a great deal of convincing that I was ill instead of believing my obesity is genetic rather than anything else. 

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GPs and doctors often tell me to lose weight then my back will feel better, they fail to understand that that for me and many other people is not always possible. Often this can lead to people, again regardless of condition, feeling very frustrated,  scared and isolated if they feel their medical needs aren't being listened to because a lack of understanding can stem from stigma around an illness. For example, often people with Myalgic Enchephalomyelitis (ME/CFS) can be met with claims that their illness is psychosomatic (or "all in their head) which reinforces the stigma that those with ME are viewed as lazy or uncooperative/unsocial, which is not the case. Therefore, I have created a small list of things that you can do to help accurately inform GPs, schools, friends and family of your condition so you can be less stigmatised on your own terms as well as give people a better understanding of your illness. 

• Create an information sheet/leaflet or poster - If you can do some thorough research on your condition and put it together into a leaflet or information sheet, including how the illness affects you specifically, what your medical and emotional support needs are, how a school or GP surgery can support you and what to do in an emergency (if applicable) can often be extremely helpful so people are able to get a clear idea of what you deal with and how to help you be that best you can be. For example, mine includes a section of what I can do/how I feel on a good day and what happens on a bad day. This so far has been helpful in not only getting support but also writing things down has helped me recognise the signs of when I'll be having a bad day. 

• Getting the right support - In terms of schools, colleges and universities there are usually many different ways they can offer to support you, it's important that if you feel you need some extra support then go for it! Gather as much information on, for example, the services your university offers, they usually offer services and support from counselling, financial advice, academic support, disability support, buddy systems and much much more. These are often a wonderful source of help and understanding without judgement, and you are less likely to feel so alone if you tell people openly and honestly what your condition is and how they can help. You may make some good friends that way too! GPs can offer similar services so make use ladies and gents!

• Get in a guest speaker - Now this one can be difficult. If you're under the care of a particular team in a hospital or similar setting, asking one of those practitioners to come and talk to your school/college or university can be extremely helpful and very enlightening for those people involved in the meeting. As a child my grandparents arranged a meeting with my school teachers and form class and my specialist endocrinology nurse to discuss exactly what is "wrong" with me. Often times getting someone with more authority to explain a condition is much better than getting parents and grandparents to explain it for you. 

• Document doctors appointments - Something I've found very helpful in the past is writing down or recording and transcribing hospital appointments. If, like myself you go to a number of appointments or are under the care of one main hospital for the majority of the time, it may be a good idea to keep a record of all conversations from those hospital appointments and often doctors from one area do not communicate with other doctors, for example one doctor told me that I am not able to have bariatric surgery as my weight gain would not be stopped by this according to her, however another wanted me to have that surgery despite me telling them no. If you keep a record it also allows accurate information to be given to different professionals, you can show teachers certain parts of the transcripts, give them to your GP to look at, show family and friends what is going on and how your condition is progressing so they can get a better, more realistic understanding of your illness. 

• Have a chat - If you're lucky enough to have understanding family or friends, simply having a chat could make all the difference in the world. Some people are more responsive to informal talks over a cup of tea or coffee, talking things over in a relaxed and comfortable way can give somebody a much deeper insight into what you go through and how they can help. Sometimes when you're talking to a friend or family member you can tell them information you may not feel comfortable telling other people, and this network of people can be your strongest support systems in the darkest of days. 

Well, that's it everybody, thank you so much for reading, please keep sharing, commenting, supporting and reading. I honestly hope this has helped somebody! Remember - KEEP FIGHTING! 

XO