When your support system fails you.

Chronic Illness is terrifying and traumatic for the person who has it, but apparently it is as equally traumatic for our support system and results in many of them not being able to cope and disappearing on us.
I suffered for many months alone before someone contacted me to offer support. In this time I experienced many traumatic things on my illness journey, things that would have been good to talk to with family and friends. I didn’t have a support network back in my early days of illness, and nobody should have to face it alone. So please, if you are newly ill or experiencing hardship, please reach out to someone if you are unable to talk to friends or family.

I should have reached out to a therapist a year ago, but instead I battled alone and held in all of this pain and suffering from the dramatic lifehange. I sat back hoping that my closest friends and family would be there to support me, but it took months before they did, and not all of then ended up by my side.

An incident happened today which has prompted me to ask the question below. I had a very close friend of close to nine years who has silenced me since getting ill. She became busy, didn’t have time, didn’t care. So, I (right or wrongfully) approached her and let out my feelings of disappointment and let down, as I have learnt not to hold onto feelings and let them eat at you, and it escalated into the usual hurtful comments about my illness, Facebook delete and the good old’ “don’t message me again”.

What is one of the inconsiderate, uncalled for (and possibly downright nasty) things that your supposed friends, loved ones or Doctors/Specialists have said to you along your Chronic Illness journey?
Please share below.

We are dealing with so much in our lives already, but society assumes that we are; exaggerating or weak, which results in having a bunch of these idiots throwing their opinions and ideals into our lives, telling us how to live and what is right and wrong.

I was told that my illness has indeed defined the person I am today, and that I also need to be better than the illness and not weak; that I use the Illness Card as a victim card.

See, this is what is wrong with society ^

And this was coming from someone who I have spent a lifetime with and who was meant to care for me.

Take a walk in our shoes and then tell me how you feel. You unfortunately lose a piece of yourself to your illness but that does not mean that you don’t try your absolute hardest every day, even though you might miss lunch with a friend, or a birthday, or work. It is NOT an excuse or an “illness card”. It is the way it is. You/we are doing the best we can, under the circumstances that we are in, and we shouldn’t be quiet about it.
And it is a shame that the people who surprise us the most are those within our support group. They don’t seem to understand how hard it is for us to struggle each day, and they expect us to get up and just face the world with open arms like they are able to. If only they had a glimpse of what this feels like, and the loneliness surrounding hardship, so they would understand entirely. Then I am certain that they would think before spitting out the harsh comments.

I have received it from Specialists before, but not from people who are meant to be apart of my support network, to which I received today.

We don’t deserve treatment like this. We deserve respect, and if we sit in silence we will not be heard.

Stand up for yourself and know that you deserve better, whether it’s a smartass Specialist, a disrespectful friend or even a family member who thinks they know your body more than you do.

Protect yourself first because I assure you nobody else will.

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39 comments

  1. The worst was probably my own father when he told me I was crazy and he was going to “put me in the looney bin” if I didn’t stop having symptoms.

    For obvious reasons, he’s out of my life now and I’m definately better off.

    Sadly, ignorance plays a bigger role in a lot of the hurtful things people say or do. I’ve learned to identify it and move on. Doesn’t make it hurt less, but it makes it easy to say no when these individuals eventually need something.

    Like

  2. Although I don’t suffer from a chronic illness, I think one of the most infuriating things someone can say is ‘smile more’ – it just gets on my nerves so much! Like if I’m having a bad day, and I’m not smiling, don’t ask me to smile! It’s not going to help!

    Liked by 1 person

  3. When I first started to take medication my mother would roll her eyes at me constantly. She would say that I was pretending, that the reason why I have anxiety is because I don’t “walk” enough, and that I just wanted attention.

    Her actions and the constant negative remarks is the reason why I stopped taking my medication.

    Liked by 1 person

  4. When I first got ill my boyfriend at the time kept getting really angry and frustrated that I was too ill to travel to see him, he kept blaming me and saying I wasn’t trying hard enough. The whole situation left me with a complex and now I’m constantly worried that people think I’m exaggerating and making it up.

    The other particularly bad one was a very copse friend, who I’ve known since nursery, just stopped talking to me when I got ill. She said she was hurt because I cancelled on her one to many times, but I think she just doesn’t understand. She once compared my illnesses to her hangover…needless to say we don’t speak much now.

    It’s so good that you managed to confront one of the people who really hurt you, I wish I could! haha. xxx

    Liked by 1 person

    1. Your partner, of all people, should be a support system! But I too feel the same with others. Once you get hit by a close friend or loved one, it makes it harder for us to trust others and we are constantly worrying.
      I had the friend thing too and am absolutely devastated, but there’s nothing I can do. Confrontation was hard. She took it lightly and I took it very seriously. She didn’t care, because she doesn’t have to suffer through it. She put a lot of immature lol’s through it, and stated facts as though she was the one who was suffering from me getting sick… not me suffering!
      xxx you are so strong and never cease to amaze me with what you have faced

      Liked by 1 person

  5. Stop reading my mind! Lol jk I have been experiencing the same thing. Mental health problems are no joke. In the past, I would bum my support group out. So I learned to be a lone wolf.

    Liked by 1 person

  6. I was told being selfish for not going into work when my knee has been dislocating daily and I keep passing out. If it comes to work or my health, I will always try to put my health first.

    I fell out with my best friend of several years because she started mimicking everything I suffered with because she thought I was getting special attention. After knowing her years and being close to her family, I knew she didn’t suffer any of the symptoms she was claiming to have and after talking to her about it several times she then went and told several mutual friends that I was lying and attention seeking. Luckily the mutual friends believed me not her.

    My third one is that my dad and step mum spent years not believing me when I told them my symptoms. It wasn’t until I got my official diagnosis a few months back they actually believed me. But that doesn’t change the many years I was accused of lying.

    Liked by 1 person

  7. I’ve lost many so called friends over the years due to my mental health problems, I realised many years ago that some of those I confided in would often get scared when I started talking about my feelings and my state of mind, they wouldn’t know how to react, and usually they would either try to make a joke out of it, or get a little confrontational with me, thus giving them a reason to walk away and avoid the situation altogether.

    People in general are quite uncomfortable talking about their own thoughts and feelings, and don’t understand how others can behone open and honest, this scares them, and when people are scared of something because they don’t understand it, they either run away, or get aggressive.

    Nowadays, however I’m feeling, if someone asks me how I’m doing I’ll just tell them I’m borderline suicidal, or something similar, then smile to put them at ease.

    You see I’ve found that making fun of myself, my illness, my state of mind, no matter how bad I really feel, will always be greeted with a positive response, and open the door to a much deeper conversation.

    Tc, E

    Liked by 1 person

  8. There have been many times that someone has said something so unfeeling/ignorant/stupid that I was stunned. Speechless. ‘Have you tried aspirin?’ from a doctor. ‘You just need to be out in the sun more,’ from a friend.
    But on the most part, I have an incredibly supportive small core of friends and immediate family who have been amazing. I would hope for that kind of support for everyone. It’s far too hard a road we are on to travel alone..

    Liked by 1 person

    1. I am so happy that you have a good support team now. I too have a small group of friends (two) who have my back every day. I would rather two than a bunch of fake inconsiderate mindless people.
      I am sorry though that you experienced the bad end of it before. Thank you for sharing xx

      Liked by 1 person

    1. I think that people who haven’t experienced the other side, have absolutely no clue what it is like. They seem to think they are to be accounted for the things they have in life. They call it: ‘my achievements’. Republicans even have the philosophy that anyone can accomplish anything.

      Liked by 1 person

      1. And why should they spend time on things that ‘costs’ them? They whole point is to ‘achieve’. This is the philosophy of the free market. Also, the Darwinistic principle of “survival of the fittest” is not only misinterpreted, but also seems to have taken place in the subconscious as “fight your way up, survive, survive!”

        That is exactly what we are doing too: surviving. And we are succesful in it, don’t forget that! 😉

        Liked by 1 person

  9. The worst would probably be people telling my partner (before he died) that he ‘deserved better’ then being with me because of my chronic illness, and that he should just throw me to the wind, to be homeless or otherwise. Lots of people line of up to appoint themselves as the real victim of your illness because they were asked for accommodation, understanding, or support. It’s disgusting.

    Liked by 1 person

    1. I was actually just saying this about my friend. They consider themselves to be the ones who are suffering with it the most, which makes zero sense. Maybe they are grieving our old self?
      I do apologise for your loss.
      I am sure you are lovely and that he deserved you, illness and all ❤ thanks for sharing

      Liked by 1 person

  10. I think that unconsciously people are afraid that this “bad thing” (chronic illness) will happen to them and they comfort themselves by saying, “This happened to you because of the choices you’ve made.” Thus they reassure themselves that if they make good choices, this tragedy will never happen to them. If reality challenges this comforting thought, they can get pretty nasty in defense of it.

    Just understanding this can make it easier to not internalize what they say. BUT, it’s fine to remove yourself for someone who is doing this to you.

    Liked by 1 person

  11. A few examples from specialists/people I know – one doctor wrote ‘drug addict’ in my file BEFORE meeting me, one boss told me that if I had a more positive attitude I would miss less work (I replied that I was positive that that attitude wouldn’t help but I don’t think he really appreciated the joke) and the most common/annoying one ‘well if you exercised more/weighed less then you wouldn’t be in pain’ – yeah, because nerves are often affected by weight. People who suggest cures are generally not only wrong but completely idiotic haha

    Liked by 1 person

      1. They wrote a letter to my GP telling her that they had assessed me and decided I was a drug addict – bear in mind it was my GP who personally prescribed all my meds – and she literally laughed and tore it up!

        Like

  12. Sorry to hear about that friend of yours- I recently went through something similar to that too, and it hurts so much. In the end, it’s her loss- remember you are not weak and you are lovely! ❤

    Liked by 1 person

  13. All these stories make me extremely sad, especially that mistreatment of the chronically ill is so prevalent; but it also brings me some comfort knowing that I’m not alone. I, too, was abandoned by a friend because of illness. We’d been friends for over 25 years; she’d seen me through the worst of my illness up to that point; and she herself struggled with many similar issues. So I was absolutely baffled when she one day (no provocation) said she needed a break, & after weeks of silence, told me never to contact her again. I still to this day don’t exactly know what happened. But it was like being dumped– & all the hurtful things they say, well, you start to question if (even though they’re ridiculous or awful) they might be true about you. It’s a terrible place to be inside your head, on top of everything else you already go through on a daily basis. Gentle hugs to all of you!

    XOXO
    Jess 💋

    Liked by 1 person

  14. When I asked why my kids and I were told there wasn’t a test for #EhlersDanlos, the doctor said, “It’s not cost effective to test for something that has no treatment or cure.” I’m a person, but a profit! In the years of medical research I’ve done since, I’ve found there are 36 Connective Tissue Disorders with overlapping symptoms, and most have the genes identified. However, 90% of the patients I’ve surveyed were diagnosed without any testing! I started the #TestDontGuess campaign to spread awareness, because early detection of any condition can be the difference between life, disability, and death. Some conditions ARE treatable, but an actuate diagnosis is the first step to getting help.

    Like

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