I came across many blog posts that say chronic illness is NOT a competition. I believe that no one should compare their illness or pain to another person’s – because how do we really know what the other person is feeling? However, I haven’t discovered many discussions about what happens when chronic illness DOES turn into a competition.This blog post may ruffle a few feathers but I think this is an important topic to explore.
Comparing patient’s conditions/ pain is the challenge many doctors are faced with. In particular, places are highly competitive to get on inpatient and outpatient physiotherapy rehabilitation programmes, mental health wards and therapy. Alongside, eating disorder centres and for bladder instillations. In some cases, vulnerable peoples routine tests that came back clear or their physical appearance looked well on assessment meant their symptoms were dismissed and they didn’t reach an official diagnosis.
And… unfortunately, the chronic illness competition doesn’t stop there.
Online trolling can occur within and outside of the chronic illness community and your own family may not accept your illness or its severity. This post is to share others and mines experiences of not feeling ‘sick enough’ in hospital, in their family and in the online chronic illness community, with ways to overcome these challenges.
Patients ‘Not sick enough’ Experiences
“When seeking mental health treatment, they only accept people that are very ill and assume that you do not meet that standard so they cannot accept you. Every step of the way they make receiving treatment difficult because you have not been recently hospitalized or you are not homeless”.
“It is so strange to me how we humans default to competition. It’s sad to say, but yes I have doctors tell me I look good so I must be better. The MS tests in general aren’t very comprehensive so I am only a 2 on their silly scale, but even my neurologist agrees that isn’t measuring things that are impacting my life the most (pain, fatigue, dystonia, cognition). I do often feel I have to prove myself because ‘but you look so good’ to other people”.
“I could only walk a mile with difficulty, down from several miles. My physiotherapist was shocked because he could see something wrong. However, he said G.P’S weren’t taking me seriously, because I could still walk a mile – so I wasn’t considered a problem“.
I was diagnosed with anxiety disorder in 2010/2011. My grandfather passed away in 2015 and my brother in 2016. Although, I have been hospitalised before due to suicidal thoughts, I couldn’t get through to the doctor lines and was turned away many times from the psychiatric ER because they didn’t have open beds. I wanted to go to this speciality hospital but, they wouldn’t admit me there either. Eventually, I got on a partial hospitalisation program and received DBT treatment that is working well. However, many times prior I was given medication and sent away being told to wait for it to take effect”.
“When I first suspected EDS, I visited my G.P and explain my brother had been diagnosed with it. I discussed how I had very similar symptoms in terms of hyper-mobility and very poor health for years. My G.P was reluctant to refer me to a rheumatologist because I had a part-time job and told me just because my brother had the illness didn’t mean I did. Due to chasing my G.P I choose to pay to see a consultant rheumatologist privately, whereby I was diagnosed with EDS. Although for my G.P this wasn’t enough, as the EDS guidelines changed in 2017. I was then was referred to have my diagnosed reconfirmed by the NHS. After my EDS diagnosis was reconfirmed my G.P started taking me more seriously as referred me on to multiple specialists. However, initially it was an extremely frustrating experience to get a doctor to listen to me.”
Top Tips to Avoid Medical Treatment Rejection
Take Medical Letters with you
If you have a complex medical history, starting from the beginning with each new doctor can be extremely time consuming. By taking medical letters with you, doctors aren’t taking your word for it, there is proof that you have the condition/ pain and had tests carried out.
Take someone with you to your appointments
I can’t guarantee taking someone to your appointments will get you a fast track to treatment. However, I have found taking someone with me helped articulate my illness, especially when forgot to mention certain things and doctors were less keen to dismiss me.
Explain any previous treatments and the outcomes
If you tried any recommended previous treatments that were not as successful as you had hoped flag these up to your doctor. This shows that you were co-operative patient but need a more suitable alternative.
Make yourself available
I understand that having wide availability is not always possible due to family, study or work commitments. However, making yourself widely available may help you move up waiting lists. If the date you are then given is not suitable, you can re-arrange it.
Keep a Diary of your Symptoms
Keeping a diary of your symptoms can help to identify trends in your pain and illness.
Research Treatments before your Appointment
Researching the treatment you are trying to get on shows that you understand what the programmes entails. It can also help manage your expectations of what it can offer you.
Asking questions helps you to understand what treatment is being offered and shows the doctor your interest and desire to get better. Also, if you don’t have medical insurance – you will be sure to want to know the cost.
Appeal the Decision
If you are rejected from medical treatment, then there is usually a process for you to make a written appeal. If you are located in the U.K or U.S, the Freedom of Information Act can help find more information on why a negative decision was made and may support your appeal case.
When your ‘Not sick enough’ in the Family
“Totally feel this, from Doctors who refuse to believe there’s a problem to some of the groups that make me doubt my own illness, to my own parents (who are both ill) not understanding why I can’t do things, etc. Then the exact same thing with mental health, and the sh*tshow of the two combined with the NHS, seriously tempted to give up all together some days”.
“I am constantly dealing with internalised thoughts about not being enough because my parents always encouraged me never to seek treatment for physical alignments unless it was very obviously life threatening. We had no ER trips rule after I went to the ER on my own following a car accident where I was having major headaches and neck pain (which in retrospect was probably an increased awareness of existing pain). Even now they tell me not to let my doctor refer me for any diagnostic testing because it will ‘cost extra’. I imagine it’s just so deeply rooted in them growing up in poverty and learning to ignore their own problems.
My dad has diabetes and consistently ignores his own pain and his need for insulin. My mom had a tumor that affected her life that she fought for 9 years, and she still carries skepticism of illness. This has been detrimental to their and my own outlook on mental health. About a year ago I was diagnosed with a spine deformation that probably could have been treated when I was a child. My parents were in shock because they always believe there was nothing wrong with me.”
“I think a lot of can relate to this sentiment. In my life it’s been more my family justifying why I should or shouldn’t be able to do something because ‘you don’t look that bad’ or worse from a ‘sister that is a nurse’ after I explained why I have to avoid stressful situations because it makes my symptoms worse. People are so clueless sometimes.
“Coming from a family that all suffer at least one chronic illness, can be very stressful if we have flares up at the same time. If me and my brother need help my parents are faced with the decision who needs the help more. Things we could need help with are being taken to a hospital appointment, having our washing done, having a meal cooked for us. Due to my parents being our carers, and suffering themselves leads to a great amount of tension in the home”.
Ways to talk to loved ones about your chronic illness
Write a letter
Writing a letter can help you articulate your thoughts without confrontation. It also gives the reader a chance to process what you have written and to write down any questions.
Discuss your chronic illness in counselling
Having open discussions about your chronic illness in a controlled environment can help you combat any issues without you or your loved ones, before the conversations get heated.
Give them a book to read about your chronic illness
The same chronic illness will vary in different patients, but a better holistic understanding your chronic illness, may make your friends or family more willing to listen to you.
Online support groups
Online support groups for friends and family or your chronic illness, will most probably exist on Facebook will a little search. These groups are safe places for your loved ones to ask any questions to support you and your illness.
Online ‘Not Sick enough’ Experiences
“Yeah for some people, it’s a p*ssing contest over who is sicker. I once had someone say I must not be very sick because I decorated my Christmas tree. Ridiculous”.
“As I have become connected with others who struggle with chronic illness, I have sadly started to sense this competition in the community. It can almost turn into a kind of social club where if your illness isn’t severe enough, you do not qualify for acceptance. At times I found the chronic illness community to be slightly toxic and unhelpful.
Reading the posts would cause me to fixate on my symptoms and get caught in the comparison tramp. These groups do have a lot of positive aspects and are wonderful for certain seasons of the life/illness, but I definitely advise caution. My desire is to encourage others to find their identities outside of illness instead of within it, and to inspire them to still fully live”.
“I have never been personally attacked on social media. However, I have seen people who are not officially diagnosed with a chronic illness and told that they may be suffering from Munchausen syndrome. This is a psychological illness, that involves someone pretending to be sick to draw attention to themselves. I think it is horrible to see others judge people in this way. These people are not medically trained and we all were undiagnosed at some point, looking for some extra support”.
Ways to deal with strangers who don’t believe your chronic illness
If someone has been aggressive or rude towards you, you can block them to the social media platform or the administrators of the group. Taking screenshots of the conversation make help and give you back your safe place.
If the person is harassing you, then blocking them can avoid getting into arguments that can make you feel stressed and trigger your symptoms.
Take a break from social media
If you feel you are having problems with more than one person, taking a break from social media all together can help clear your mind and re-evaluate if you want to keep sharing your story online.
Remain calm and carry on
At the end of the day, you know your symptoms and how your chronic illness affects you – so try to not worry about strangers opinions! If you are being attacked because you are undiagnosed, you can calmly explain you are on your journey to diagnosis and ask to leave the conversation there.
Sharing is Caring
I would love if you shared this post to help people who are experiencing not ‘feeling sick’ enough to show them their not alone and ways to start to overcome it.
Have your Say
Have you or know someone who has ever experienced not feeling ‘sick enough’? If so I would love to hear about it below.
15 Ways to Support your Chronically Ill Friend in Hospital
10 Things Not to Say to Someone with a Chronic or Invisible Illness
How to Support a Spoonie 6 Dos and Don’ts
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Excellent ideas for dealing with others.
Thank you Carole x
What a complex, and equally heartwrenching subject.
It’s hard enough battling an illness and then have others dismiss it because you don’t exhibit so-called signs of a serious illness.
Taking a firm stand, following your suggestions and becoming an advocate for our own health is key.
Great post. Yes, it’s a sad fact that being ill somehow becomes a competition. We might have battles trying to get doctors on our side, but I’ve seen the social media competitions ‘I have it worse than you’. It’s really not nice.
Thanks Elizabeth. I know it is horrible I am now way more selective about the online support groups I join ! Xx
I am genuinely thankful to the holder of this website who has shared
this wonderful paragraph at at this time.
Thank you for reading and leaving a comment 🙂
This is such a thorough look at this topic, and I think you’ve done brilliantly. It’s quite a tricky one to unpick, too, and I don’t think it’s talked about often enough considering I think there are ‘not sick enough’, competitive aspects many of us, myself included, can relate to. Brilliantly done, and I like that you’ve included tips on managing it and also in dealing with GP appointments!
Thanks for reading Caz. I was searching the net and couldn’t find any blog posts on this topic which inspired me. Although, at first I thought it was just gaslighting with doctors mainly until I actually started speaking to chronic illness sufferers. I think if I was going to discuss a big problem, it was wise to include tips that have worked for me overcoming this 😊 Morgan xx
What a wonderful topic to cover. As a person who faced gaslighting about her illnesses from family and doctors for decades, I can’t stress enough how much I detest this tendency toward comparison which causes deep divides in a community that needs each other, regardless of whether we have the same or differing diagnoses. You’ve come up with some wonderful tips on dealing with it and I applaud your efforts! I’ll be sharing this EVERYWHERE!
Hi Michelle, I am sorry tris post is so relatable to you, but it highlights that it is an issue. Thank you for reading and leaving a comment, your kind words and for sharing 💜 Morgan x
Morgan, this was a terrific post! Well done! Extremely in depth, relevant and relatable. I have been enjoying your site very much. There is a lot of information here and very enjoyable copy. I’ll be around often! I hope you will consider accepting a nomination for Brains & Bodies for the Disability Blogger Award. It was developed by Georgina from Chronillicles for those blogging specifically about Chronic Illness, Special Needs, Disability and Mental Illness. I think your site is a great fit. Should you consider accepting, when you have a minute or two, please stop by SeeJayneRun.com. My latest post will discuss the award and the acceptance guidelines. Congratulations and keep up the terrific blogging!
Sorry for the late response, I didn’t see this comment. Thank you for the nomination for the award I would love to accept. It may just take me a while to get a new post up and running as I am also working on my social enterprise at the moment. I will read your post through and let you know when I get mine up 🙂 I look forward to also checking out your blog to and thank you for your kind words xx
Terrific! Wonderful news! Please don’t feel any pressure whatsoever. There is no time limit. Take a week, a month, a year! Just know that you are being celebrated for great work! It will be fun getting to know each other. I’m looking forward to it! ♥️
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My younger cousin has Crohn’s Disease which is basically an invisible chronic illness. He just graduated high school and his numbers are finally the best they’ve been his entire life. They are almost ready to consider him “in remission” as much as you can be with it. I know he’s had trouble with teachers who didn’t believe his frequent bathroom breaks were from it and he was just trying to skip class, etc. He also carries a card that says even a private business HAS to allow him to use their restroom in an emergency because of the disease. It’s not easy, but as a family, we have all learned a lot about it and try to be as supportive as we know how to be. It’s horrible when others aren’t taken seriously.
Hi Stephanie, yes Chrones is an invisible Chronic Illness. That is amazing your cousin is getting good grades. Teachers is also another dimension to this so thank you for highlighting that. I am glad he has a cousin and a family that is as supportive as you 💜X
What an interesting post… I’d never thought about chronic illnesses in this way. I have a chronic lung condition which can be debilitating at times but I’ve been very lucky to have received great treatment so far without the need to ‘compete’.
Thank you for sharing your experience although you haven’t felt you had to “compete”. I am sure not everyone feels like they are in competition, it was just after hearing so many other chronic illness sufferers stories it would be an interesting topic to share. I am glad you are receiving the medical support you need! Morgan xx
I can totally relate to this having migraines and other issues. I usually avoid Doctors as much as I can, they just want to pump you up with toxic drugs and create more problems.
Hey, I think a lot of the times doctors try to address the symptoms rather than find out the cause of the problems (well in the U.K.) unless you have related illnesses. Unfortunately, the NHS is so strained! Although , without the NHS I also don’t know where I would be in some situations xx
Very much agree with this post! I’ve encountered “not sick enough” attitudes in doctors, employers, and family.
I started experiencing wrist pain after doing manual handling work at my job at the time. It took nearly a year for a diagnosis to be settled on of probably tenosynovitis. Nothing showed on scans or in surgery, and when I’d been on complete rest for a few weeks my immediate pain decreased, but doing “too much” (which often wasn’t much) triggered the symptoms to come back again within hours/days. Yet because it wasn’t immediate, it wasn’t real. It didn’t even count as having any impact on my life and working ability when I was forced to settle my worker’s comp case. The only “physical disability” recognition was slight nerve damage from surgery.
My family struggle to understand how so much of my life is impacted by my HSD and that I’m not being lazy or weak. My frequent naps, time off work with each virus I catch, walking slowly because of foot and leg pain, struggling with even carrying shopping or cutting vegetables or walking a dog… they just don’t get them. Wearing my wrist supports is seen as “giving up” rather than managing and reducing symptoms, and gaining weight rapidly due to binge eating disorder brought on by lots of highly stressful situations interacting, is considered “killing myself”. I was also supposed to be able to work the same as anyone else, and reduced hours or days of work was considered not acceptable or what “should” be done, and my chronic fatigue didn’t matter.
Hi Rhiannon, I am so sorry to hear you have experienced gaslighting in all these situations. Employment is also another dimension too, although I think some people are to worried to highlight their chronic illness to their employer.
I hope you are in not as much wrist pain now but I completely understand where you are coming from because I broke both my ankles last year and some people say “well your ankles are broken now”. I hope you managed to get a disability allowance when you wasn’t at work and agree surgery should show it was a big issue.
One of my illnesses is Ehlers Danlos Syndrome , but I understand people with HSD can have some of the same severity of symptoms as people with EDS, they just aren’t as hypermobile on the Beighton Scale. I also blog about EDS quite a bit of you fancy a read – you can find the category on my homepage. If you have have flat fee I can highly recommend ankle braces / deep insight shoes like doc Martins or Timberlands for stability. I also have those struggles but don’t have a dog 😦 I can see how wearing wrist supports seems like you are giving up because it weakens the muscles long term but if you are doing physio exercises it does show you are still trying ! I have also gained a lot of weight and I am sorry people think that . What is your job now ? Xx
“IF YOU THINK SOMETHING WILL BE REAL”, this phrase is very true, if we create positive thoughts and the best of all happens if we really believe it, in this way the brain takes it as a truth that induces the responses of our bodies that allows cure us, thought will be transmitting a certain healing energy unlocking functions that favors our organs, something that oriental disciplines such as fengshui, aromatherapy, yoga and even acupuncture have as their main mechanism activate the neurotransmitters, secretions of chemical substances that induce positive responses in our body.
People in this world and online are mean. Mean kids become mean adults. Unfortunately not much changes and many things stay the same. Stay inspired!
I have worked with a lot of patients with chronic illnesses and I can tell you each disease is unique and each patient copes differently.
I’m sorry you have to go through this. All I want to say is that you have a beautiful soul. I wish you all the best and keep it positive.
I am really sorry you have to go through this, you are amazing – I hope you stay inspired and positive!
I can relate to it so much. I live with multiple chronic illnesses and generally my pain level is 8. But since I look fine by outside and young, my family never takes me seriously or mock me. Thankfully my Drs has finally started listening to me. Also you mentioned bladder instillations? Do you struggle with Interstitial Cystitis too? I hope it’s okay to ask. This disease is currently ruining my life.
I can sympathize with that in a weird way when I was with my ex. Whenever I would get sick she would try to be sicker so she didn’t have to feel responsible for helping me out at all. At first, I thought it was a coincidence but over time I realized it was something much more difficult.
Having to advocate for yourself while also dealing with illness is such a terrible problem with our current healthcare system. I’m so sorry that so many people have to deal with it.
You have to be your own best advocate. I was diagnosed with pots 5 years ago and had so many drs tell me I was making my symptoms up.
Hi Neely , that is is awful but also so common xx
The healthcare system is so difficult to navigate and can extremely frustrating! Thank you for sharing your story, this was very informative!!!
Omg I could only imagine how tough it must be to have an illness people can’t see. My daughter doesn’t have an illness, but she’s autistic which is pretty much invisible. So I get what you mean about this
Hi Courtney, yes it is and autism has many other difficulties I hear ! Xx
I have struggled greatly with family not believing. It took a friends parent publicly asking me some questions regarding my vision before they finally believed I literally couldn’t see ten feet in front of me. It’s dangerous when we deny people the right to be believed and I work to not do that to anyone else.
A great post revealing the issues which must be pointed at and discussed!