Support When You Suffer With Chronic Illness.

I have made a huge decision. One that changes everything for me.

For years I have hidden away in my very own little bubble. I have recently realised that in actual fact, I have created my own prison.

I have kept myself “protected” from the outside world. In reality, I have been scared. Scared of the judgements, the not so quiet whispers and even just the opinions of others.

What I am trying to say is, there are certain aspects of my life that I haven’t spoken about before.

I have been honest about my mental health issues but I have never opened up about the rest.

The truth is, in a way I’m not like other young women, I guess I’m different. This is because I suffer with chronic illnesses. Aside from my psoriasis, they are invisible illnesses.

One of those chronic illnesses gives me mutant like abilities such as this cool thing with my thumb…

A photo of a hyperextended thumb

I’m probably going to be questioned on the authenticity of this photo.. No it’s not photo-shopped. Yes I’m willing to show video footage.

Apart from that, the other symptoms, well, they suck. They suck ass. If I am to be fully honest with you, I haven’t woken up once in the last 7 years where I haven’t been in physical pain. It’s not ideal, but it is what it is.

I have spent the last 7 years learning how to live again and coming to terms with the fact that this my life now.

Chronic illnesses are my life now.

I fell ill when I was 19 I’m now 26. I have come way too close to death 4 times. (If you are a medical professional who has saved my life in the past thank you!).

Believe it or not I suffer with multiple chronic illnesses. I’m currently undergoing tests regarding cushings syndrome and I have already been diagnosed with, autoimmune issues, joint hyper-mobility, sciatica, fibromyalgia, ME, asthma, psoriasis, IBS and endometriosis.

I’ve currently been waiting for 7 years for another diagnoses regarding issues with my gynaecological health.

It’s like Pokemon at this point, gotta catch um’ all.

I’ve lost count on the hospital stays the different doctors/specialists the gruelling tests and worryingly, the operations.

All of that history yet I can count on one hand how many people know the full extent of my health issues. I have always been so secretive where my health is concerned. There’s a couple of reasons why I am so private on this part of my life.

Firstly, I hate looking sick I will spend time and effort to ensure I look like a ‘normal’ young woman. This and my age means people doubt that I am actually telling the truth.

Members of my own family didn’t believe me for many years, that hurt me deeper than I have ever let on.

They made it transparently clear that they believed I was lying not just to me but to anyone who would listen.

I would love more than anything to be able to explain, just what lasting emotional damage they have caused me. It is lasting, it makes me fear even more that I wont be believed. After all if your own flesh and blood doesn’t look out for you..

If I could give advice to those who care about someone who has a medical condition it would be simple, don’t judge what you don’t understand.

None of the family members who have bullied me have ever gone through anything remotely similar to what I have. I fell ill at what was supposed to be the best time of my life. Not even mentioning other dreadful situations I have faced in my personal life.

Due to the fact it is highly likely they will see this I’m going to end it here. But, put it this way, they have absolutely no idea.

I spend time with them I chat with them, I have moved on from it. Although, I haven’t forgiven any of them. I don’t know if I ever will, or if I would even be able to.

Not only was/is their behaviour appalling they made sure my mental health suffered just as much as my physical health.

The harsh truth is, If it wasn’t for the fact we are related I would of removed them from my life a long time ago.

The second reason, I hate that stomach clenching look. For me personally, there is nothing worse than sympathy. From that moment on they treat you like you are made of glass, needing to be triple wrapped in bubble wrap. Protected from the world.

After my brushes with death and my 7 years of hell I can assure you all that I am damn well strong enough to protect myself. Because that is what I am, a fighter.

I created this website because I wanted to help people. Like I said, I know how it feels to be scared. To believe you are alone, wishing you had just one supportive person telling you everything is going to be okay. When your backs up against a wall and you just need that one outstretched hand.

I wanted to be that hand from behind a computer screen. Which is exactly what I have done here, that is what I have created.

Yet still, instead of feeling content or proud of my progress, I have felt restless with my creation ever since my blogging journey began.

I have been so wrapped up in avoiding my own situation that it blinded me from seeing the truth. It made me doubt I had anything to offer.

I have now seen the truth, realised, I can help people, I do have something to offer.

I have spent 7 years of my life feeling as if I have been given a curse. I now want to change that to an opportunity, a chance. A chance to stop others from feeling as alone and scared as I did.

The opportunity to do the one thing I’ve always wanted to do, to make a difference.

If I hadn’t gone through everything I have, the physical and emotional pain, the relentless suffering, the constant worry and everyday struggle I wouldn’t be in this position.

Lately I have been browsing some forums and I come across multiple conversations by people suffering from chronic illnesses. Many of them looking for support and a kind word after recently been diagnosed with a chronic illness.

Some have lost ‘friends’ due to their chronic illnesses and the fact they are now unable to participate in their activities. Uneducated family members throwing accusations around like glitter bombs,

“It’s just pure laziness.”

No. They are scared and they are alone.

Whilst reading these pleas for help and guidance, It registered with me, I was exactly where they are now.

7 years ago I was stood at the beginning of a long painful road, I had nowhere to turn and no one to relate to. It has been a constant battle. My ‘normal’ life was lost in the blink of an eye.

I’ve lost people I truly loved along the way and it has broken my heart. Because in all honesty, it’s situations like this that really show you who can rely on and who your true friends are. Sadly, that often leads to heartache.

If I had a choice, no other human being would ever have to go through what I have in the last 7 years, in fact chronic illnesses wouldn’t even exist, but I don’t.

I can’t prevent others from beginning my journey, I can’t take away their pain or promise them a thing. But I can hold their hand, I can walk with them and I can show them the way.

I’ve walked it, I’ve felt it and looking back, for me, there is only one set of footprints.

There are a lot of promises I can’t give. What I can do is promise that anyone who reaches out to me will look back on their journey and see two sets of footprints.

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22 Comments

  • Yeah Lifestyle

    Here’s me giving you a virtual hug Sarah! Looks like you have come on a long journey and I am glad you are coming to terms with all the issues you are facing and sharing it and being open about it to everyone. I think its some sort of healing process for you too. Also that thing you do with your thumb is totally cool and can be a great party trick to break the ice. *hugs*

    • Sarah

      I actually send that photo to people during conversations instead of the thumbs up emoji ?. I literally created my own emoji ?. But in all seriousness thank you for your very kind words. Sometimes people don’t realise how far a little kindness can go. Your support, it really does mean a lot to me xx

  • Claire Johnston

    Sarah i totally understand you know I’m hypermobile too right?. People think it’s all funny tricks and giggles not that it’s easier to dissipate things and that even things like me learning to walk again is harder as my knees hyperextend i have psoriasis too in my scalp and I’m asthmatic. I do think all mine are linked but i got told no by a doctor so going too try and get properly looked into. You aren’t alone I’ve has some funny looks from people when i try to explain things. We’ll get through this one step at a time ❤❤

    http://www.beautyreviewsandbargains.co.uk

    • Sarah

      Honestly, if you believe it’s all contested I absolutely agree that you need to look into it more and get a second opinion. Doctors are fantastic but some of the information they give is based on their own opinions. They try not to do that but it’s an impossible task. When you feel strongly about something its always worth pursuing I have always done my own research on my health. Everytime I get a diagnosis I look into it myself. Having an illness is a difficult often heart wrenching situation and we have to do whatever we need to to feel comfortable and confident. Xx

  • Kelly

    Oh honey!! This made me tear up :(!
    You definitely are a fighter!! Those who never believed you sucked, even if they are family.
    You are an amazing person and for deserve any of this. I don’t have any chronic illnesses apart from asthma which doesn’t count anyways, so I don’t really know the struggles. But do know that I’m always here when times get tough :)!!!

    Kelly

    • Sarah

      Thank you! And right back at ya on that front! Whenever you need me!.. I’m hoping karma comes deals with them for me! Family or not ? xx

  • Juhita Gupta

    You are a fighter alright Sarah and it’s a privilege to know you. What you are trying to do is commendable because it takes real strength to overcome your own problems and extend a helping hand to others.
    Usually when I read about a blogger who says “I just want to help you”, it makes me roll my eyes and head in the other direction, but with you I know you are being sincere and those who do reach out to you will find a strong support system here.

    • Sarah

      The Truth is I do have worries and fears about being so honest so pubilcly. I’m scared people will think of me differently treat me differently etc. What you just wrote really reminded me of the bigger picture. The reason why I have done this and I really do appreciate that. It’s funny because as much as it pains me to admit it but what I have been through has made me a better person. Feeling how I have felt really opened my eyes to the fact that there are a lot of people who feel that way and a lot of suffering. If me being a bit embarrased over the internet helps just one people realise they are not alone then in my eyes it is worth it. So thank you so much for your words and I hope you realise just how much I appreciate them xx

  • Maud

    You are so strong! Man, this was a beautiful and powerful post. You have come a long way and I am super proud of you. You’ve gota beautiful mission of helping others the best you can and I am 100% sure you are going to make a difference! (You already do if you ask me). Sending hugs!

    • Sarah

      Thank you so much for having so much faith in me and supporting me! All of you who have been so supportive will never quite realise just how much it helps me. Xx

  • Evelyne

    A virtual hug from me, too, and seriously, all my admiration. You’re so strong and opening up about this online is one more step that I’m sure will give other people in similar situations hope and inspiration.
    A friend of mine has joint hypermobility – and even just watching her struggle with the illness itself AND the actual laughs she gets instead of understanding or help made me feel angry and helpless. I can’t imagine how bad it must be to have several chronic illnesses and then dealing with people’s reactions on top of the pain. What you say about hating looking sick and working hard on presenting yourself as the opposite is so admirable – and so frustrating when I think about the reactions you got due to that strength!
    I’m sure your blog will be great for helping other people and sharing your experience, especially since chronic illness isn’t talked about nearly enough. All the best!!

  • MJM

    Stay awesome and continue to fight the good fight. What you’re doing is very admirable, both by sharing your story and by trying to help others.

    People seem to like to argue, blood or not, it’s in their DNA. Also, family or not, people who are detrimental to your health should be cut out of your life regardless of who they are. That’s not saying that in the future things can change and they can be welcome back, but you shouldn’t allow yourself to be criticized, attacked or be little because of what you suffer from and the fact that you’re willing to openly share at regardless of the consequences.

    You’re a fighter and you should be proud of yourself.

    • Sarah

      Most of the family that bullied me and spread venom to anyone who would listen have finally realised the truth. However, there are still one or two. I tend to keep my distance.

      Thank you for such a lovely comment x

  • Ashadah Fashion

    To even make a blog post about this topic takes courage and strength, you really are a fighter and you will always have support of the blogging community on your side girlie! *Virtual hug*

    • Sarah

      It’s 2:30am where I am and I’m still awake because I’m having a flare up of intense pain. I’ve pushed myself too far lately and run myself into the ground so your comment was incredible timing. Thank you so much x

  • Caz / InvisiblyMe

    My heart ached when I read this because I shared a few similarities with your story myself, having basically lost my normal life overnight when I was 19 and my health went downhill from there with ‘invisible illnesses’, which inspired my own blogging adventure. You write so honestly here and make some very good points. I struggled for a while with coming out and opening up, and still do, but it gets a little easier with practice. You definitely have something to offer. Sharing your journey is a great source of support and inspiration and information for others. x

    • Sarah

      Thank you so much for your comment. I too was 19. It sounds like our journeys have been a very similar path. I really hope you haven’t had issues with members of your family like I did! It breaks my heart hearing that others have had that treatment because I know how much it hurts. I’m so sorry you too are a sufferer but I’m pleased you are now opening up, it’s very difficult to do. It’s hard for those around us to realise just how brave we need to be on a daily basis. Thank you so much for commenting xx

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