Are you the youngest ill person in the room?

I feel like I frequently am.

Whether it’s at healthcare events, support groups or consultant waiting rooms. I’m usually the odd one out, the person who is “too young to be sick”.

Of course young people get sick

I never really felt this was an issue until other people mentioned it. A nurse remarking as a lay waiting on an operating table that I was younger than most people the hospital saw. Older people at my support groups tutting and sighing about how it’s so tragic that I am there.

This is another chronic illness myth that I have to dismiss, the old and young alike get sick. And with growing populations that live longer, and with a greater quality of life and our increasingly stressed lifestyles, more and more people under 30 with a long-term illness is going to become the reality.

I personally see it a a positive rather than a negative. Younger faces with illness mean more chronic illness is being diagnosed earlier and with greater accuracy than before. I am seeing younger people diagnosed with endometriosis with mixed feelings of sadness and relief. I am relieved that fewer young people have to go through the quiet stigma and suffering that I had to for almost a decade, that they can benefit from increased awareness of the disease earlier, and get the treatment and support they deserve with more expertise than I ever did. There’s always room for improvement, but it’s a start right?

Let’s not forget that the average amount of time that someone has to live unknowingly with a terrifying chronic pain or symptom has been much longer in the past. It takes an average of eight to 10 years for endometriosis for example. So with that in mind, isn’t it better than more young people are getting pushed to the foreground when it comes to illness?

Being young and ill can be extremely isolating

Illness is a burden on all age groups, but it feels particularly cruel as a young person. Some people are still developing who they are, while trying to grapple with ill health. Others are trying to manage with studying and education.

I’m approaching my thirties now, but one of the hardest things for me remains not being able to meet the expectations of my peers. To not have the same amount of energy, to not be able to do the same activities or events. To have to turn down invitations perpetually (and occasionally be accused of not “being a team player” as a result of it). All of this negativity when I am trying my best still hurts me to this day. It’s still upsetting to not be able to fully enjoy what is meant to be the prime of my life, but I remain positive and optimistic about what I still have, and what I can still accomplish.

You feel very out of place then, when you turn to someone for help, or go to a support group, or a meeting, or a hospital and someone points out that you’re too young to be there – it’s meant in a supportive way, but it can be dashed with a hint of prejudice.

I see tons of help in my area for the over 65s, and I see a multitude of help for children, but there’s very little support for people of working age (who can’t get to the multitude of weekday meetings for people who are chronically ill), and even less for 20 or 30 somethings. And I don’t mean financial support. Nine times out of 10, I just want someone to speak to, someone who is on the same wavelength as me and faces a lot of the same pressures.

9 responses to “Are you the youngest ill person in the room?

  1. im 20, i feel the exact same way

  2. I can relate. I think it’s hard to be younger and have a chronic illness, particularly a hidden one, as nobody expects it. And even when you tell people, there seems to be a lack of understanding and acceptance because you look fine. I agree that we are seeing more younger people being diagnosed because of advances in medicine and people are getting a diagnosis earlier than they would say 10 years ago. And like you, I think this is a good thing. It means people are getting treatment sooner. I’m lucky in that fibromyalgia is not progressive but for an illness that it, surely getting it diagnosed and the person onto treatment asap is the best option.

    It’s hard to say no to things without feeling guilty and it’s inevitable to feel envious of others who have boundless energy and don’t have to think about any consequences of the choices they make. But we have to remember to put ourselves first and be selfish now and again. It sucks that illness almost takes away our freedom and a little part of ourselves with it. However, all we can do is our best and if that’s not good enough for people… well sod them! 🙂

    It’s great to speak to like-minded people. I enjoy being on Twitter for that reason. I am also lucky in that I have a great friend at work. She has MS and completely gets me. It’s nice to just be me and be able to discuss all my problems and fears and receive total empathy and understanding.

    It’s sad that there is no support for your age group, especially given your illness. Forgive me if this comes across wrong but I would have thought that endometriosis would be particularly difficult for women of this age group. Even if the thought of children hadn’t entered your mind, I would imagine the shock of the diagnosis must bring out a lot of emotions.

    I’m guessing by your post that you are in work? Are you ever made to feel like you are not ‘ill enough’ to get understanding/sympathy because you are able to work? I feel like this sometimes. Probably a lot of it is all in my head! But I feel others might think I am not as ill as them because I work full-time. Yet I do it because I have no option but to. It’s hard and takes a lot of strength to do it and I often wish I could work less (and maybe I will in future). Being of working age and ill is very difficult.

    • Couldn’t have put all of that better myself, it’s always nice to meet someone who have have common ground and understanding with – please keep in touch.

      Regarding fertility, yes is it a great burden to many of us with endometriosis. You don’t really appreciate how family-focused our society is until the option of starting a family is reduced or removed altogether. I must admit that this is not something that troubles me as I planned on not having a family before my endometriosis so my complicated fertility was greeted to me by an “oh… okay” rather than the heartbreak a lot a women experience. I do find people’s reactions to it hard though. People assuming that having children is the hallmark of adulthood, people asking me “when” I will have children and not “if”. My personal bugbear is people trying to empathise with my illness by saying how hard raising their children is. While I can appreciate their difficulty, they are in no way comparable and it’s a painful point that I can’t really verbalise to most people as it’s not polite. Just as I cannot assume what having children is like as I have never had any, neither can someone else attempt to even start to guess what my life with incurable illness is like, and yet parents try. Bit of a double standard there. 🙂

      I feel the immense sorrow of those I know with endometriosis who desperately want to start a family though, it is a deep agony that I can fully appreciate.

      I completely understand what you mean about work, that “ill enough” sentiment goes both ways. Both from people who are healthy and people who are ill. I feel like I straddle both lines equally sometimes. Although people never say it I can tell people are thinking “well if you’re well enough to do that then…” I, like you have no choice, I have a mortgage and bills to pay and I am the main income in my household. I work full-time but it’s quite often at the expense of everything else. I wouldn’t adjust it though, it’s important to me to have independence (both physical and financial), and I don’t think most of people around me really appreciate how hard it is.

      • Yes society is very family orientated. Ever since I got married last year all I get is ‘it’ll be you next’ in reference to having children. I do not have a maternal bone in my body! I’ll never say never as one day that might change. But it’s so rude of people to set expectations on how you should live your life. I have a friend who is struggling to conceive and she is fighting back tears when people make these unthoughtful remarks to her.

        That’s unbelievable that people try to relate to your illness by commenting about their children. ‘Oh you have a chronic illness and might struggle to have children but that’s okay because raising kids is hard’… that’s basically what they are saying. It’s infuriating and potentially could be the worst thing in the world to say to someone.

        You have a great attitude towards that, I need to take some of that as work is something I am struggling with at the moment! Take care.

  3. Pingback: You Need To Look After Yourself | Fibro GeekFibro Geek

  4. I am 22 – I have has endo since I was 11 and officially diagnosed at 18. I have been trying unsuccesfully to concieve for 2 years, for which I get told “your young it doesnt matter right now” BUT IT MATTERS TO ME! No-one listens to me because of my age 🙁

    • Yes, I know what you mean, and I’m infuriated for you. I’m so sick of being patronised about my experience of illness simply because of my age. I’m sad to say it won’t improve for a while yet I’m 29 and it still happens. I’ll probably be half way into my thirties and it’ll still happen. It’s not a problem most men have to deal with if you ask me. Terrible double standard there. I’ve sworn to myself that when I reach the age that the people patronising me are I won’t say such hurtful things to others and I’ll treat people younger than me as equals.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

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