feeli like the system fails us

[Wishtobefree]

Hi,  I feel like I've given up hope in life and our medical system. I'm just laying around the house and just waiting, waiting forever for appointments. I've had a long history, since childhood of depression and trauma. From growing up without a mum, to childhood abuse, and neglect, and a major loss at 25 of my sister and Nephew in a road accident, then my only support person, my dad moving to Perth. Along with lots of other things, too many to go into. I was also diagnosed with osteo arthritis and bone degeneration in my spine, hips and neck in my late twenties. Over the years I've worked in many jobs, including my main job which was as a personal care worker for over ten years. I cared for a man for over 4 of those years and then became unwell again. I have always been unwell but had it kind of manageable until then.

I was a single mum of a teenage boy at the time. Had to quit my job and the last 9 years have been a constant struggle. My son left, I became homeless because couldn't afford my rent. Cut a long story short after lots of moving around, finally got a housing trust unit and after dealing with two and a half years of constant stress while living there, dealing with drunken people out the front of my unit constantly and all that goes with that, dealing with junkies, and eopke jumping my fences, being bashed twice while there, and numerous letters to council, HT and contacting police. I succumbed to the stress and gave my unit up. 

I also have CPTSD, fibro, CFS, osteo arthritis, and other ailments. Depression, anxiety, and I've been trying to get help for all this for over about 3 or so years. It's been a nightmare to say the least. I've had to apply for my second exemption for centerlink so I don't have to deal with all their bullshit. I've had at least 6 jobs in the last three years and every time I've had to leave either due to stress or chronic pain. Not to mention the chronic fatigue I suffer all the time. I was trying to get my last DR to help me to do the things I need to apply for the DSP but after her total lack of incompetence, I left there feeling deflated and so depressed I just gave up. Over several appointments trying to explain to her what I needed her to do and feeling like she's got dementia or something because she can't remember one thing from another between appointments. I honestly felt like life was a waste of time.

I've tried to Pur in a complaint about her but had no response. 

I've found a new DR who seems nice but now I'm waiting for appointments. I've been referred to a pain clinic at the hospital which is different to the pain course they recommend you do which I've already done. They sent me a questionnaire which I answered the 1 to 5 questions with the highest rating for everything because that's how I feel. Thinking they would see how depressed I am that they would be in touch soon. After a few weeks of no response I called them to find out I had to wait because there in the middle of moving. It's been a couple if weeks since then. 

• I feel like all these systems they have in place that are supposed to help people with depression and pain are useless. I pretty much have no family except my son, who is 23 and struggling with his own issues. I am in so much pain 247. I have constant numbness in my arms, feet and pain everywhere. I've gone to the hospital before and been sent away. I've called lifeline and felt completely dismissed and was told to call my DR????? What a joke that is. So sunk back into complete despair. I feel like our systems are a complete joke and wonder why there is so many people committing suicide because when you need help it's that hard to get it that hope flies out the door like a bird. I've pretty much given up all hope for my life improving because really no one listens anyway. You get a ten minute slot to try explain it to your DR, which I have to pay a $35 gap everytime. When your on jobserker payment that's almost that hard to have. I feel so sad all the time, don't even want to get out of bed most days..I don't see the point. I feel like no one really cares and our medical system is a joke. I hate life right now and can't see an end to all this any time soon. So just laying around wallowing. Our systems are laughable and I wish I could run away and be a nomad in the bush. It would be more enjoyable than this!

[Sophie_M]

Hi Wishtobefree

Thank you for opening up and sharing such a raw and honest post. Im so sorry to hear about everthing you've been through, its a lot for one person to carry, and your words reflect the exhaustion and pain that come from fighting everyday to stay afloat. 

Please know you are not alone here, Many people in this community understand how it feels to be unheard, overwhelmed and left waition in a system thats meant to help. Its ok to feel what you're feeling. You're showing strength by speaking up and seeking support. 

If things feel heavy right now we do encourage you to reach out to 
Beyond Blue support services 1300 22 4636 ( available 24/7)
Lifeline - 13 11 14 ( 24/7 crisis support)
suicide call back service - 1300 659 467

You deserve to be supported,believed and cared for , we are listening and im sure the community will be here to support soon. 

Sending you warmth and care,
Sophie M
 

[Wishtobefree]

Thank you. Really that all us just the basics. There's so much more but I've got to the point that I've gone right back to being an introvert. I don't even feel like I can talk to anyone right now. I have so much going around my head and everyone is sick of listening to me in my world. Anyway, thank you for a nice bit of encouragement. It will be nice to have some support

[TrueSeeker]

Hello Wishtobefree

I'm so sorry that all this is happening to you, it can all seem too hard and unfair. Sometimes all we can do is just to focus on getting through the day, trying to find some solutions that might work and most importantly find some little joys in life. It can be something very little like a lolly or a piece of chocolate and eventually find something much better that can help us to get through all of it.

I hope that things will work out for you, please be nice to yourself and let us know how you're going whenever you feel like it

[Eagle Ray]

Dear Wishtobefree,

I am so sorry to hear of all you have been through. It really is a lot. I think applying for the DSP makes sense but I totally understand all the frustrations make it so much more difficult.

I was granted the DSP last year and have a similar profile to you in terms of mental and physical health. I feel as long as you have the supporting reports/evidence from a GP and ideally a mental health professional in the form of a psychologist as well, such as for the CPTSD, you have a very reasonable chance of having the points required on the impairment tables. My diagnoses were primary biliary cholangitis (autoimmune liver disease), fibromyalgia, chronic migraine, CPTSD, anxiety and depression. I already had a clinical psychologist who wrote a report for the mental health diagnoses and the GP included the other things in the report. Centrelink already had a Verification of Medical Condition form from my liver specialist for the liver condition. I had a very drawn out process with getting the written report from my GP and I really thought he was just not going to do it, so much so that like you I gave up and eventually tried another doctor at another practice. She wasn't too helpful though. But, to my surprise, some time down the track he eventually completed the report. So I just wonder, if you have a history with the original GP, if she might actually deliver the goods if you persist and keep advocating for yourself? I know that is exhausting but I found the only way I got through was one foot after the other and to keep asking for things. I did find the whole process highly stressful though and I really feel for you going through it.

I was also with a Disability Employment Service provider while on Jobseeker as opposed to a standard employment agency. I am wondering if you are as well as you would definitely qualify and they are more flexible. My DES provider wrote a letter of support for the DSP and I'm sure that helped as well. I had been with them a couple of years at that point. The provider I was with ran occasional seminars on how to go about applying for the DSP that were delivered by a local advocacy body through them. The advocacy body also offered support in doing the application if you wanted it, but I chose to do it myself online and I attached the reports from the GP, psychologist and DES provider.

I guess what I'm saying is, it's a horrible process to go through, but if you just take it one step at a time and get the bits of paperwork, you can get to the stage of submitting the application. I think one of the worst things about it is knowing you are suffering and struggling but having to go to so much effort to prove it, and I know how that can be triggering in itself. I certainly found it so. But I got through in the end, basically by breaking everything down into small steps and just keeping going with it. So I just want to send you strength and support 🙏

Also, I would say with the Helplines such as Lifeline, if you get someone who doesn't leave you feeling good after the call, it's often worth taking a bit of a break and then trying again. I have done that with Lifeline and then the next call has been with someone really empathic and present with me and I've felt better and more grounded and resourced after the call. Sometimes it's just what I needed to get off to sleep or simply dial down the level of stress in my nervous system.

Take care and listening if you need to chat.

ER

[Wishtobefree]

Thank you, yes that is what I try do. Come back to the moment. I have two young pet turtles, I lay on my bed watching them. I usually paint but lately I dint even feel like doing that.

All I can do is hope one day so.ehow it gets better. 

Thank you for your kind support

[Wishtobefree]

Thank you. Everything you say is exactly how I've been, with the DRs and everything. As for the Doctor, it's a bit complicated with DRs for me because over the years I've had quite a few DRs with moving around. This last Doctor, I seen her for a fairly long time, then when she changed surgeries I started seeing another Doctor at a different surgery, I ended up seeing a couple of different Doctors there because I didn't like them. Then found out my old Doctor was at that surgery so started seeing her and I noticed she was not as good as she used to be. I know it's fair to say people age and change but as a Doctor, I found her ethics really bad. She put me on health care plans and couldn't remember or write referrals to people. Then I had started the DSP claim myself and said to her all I needed her to do was track down my medical evidence for me and write me a letter. Every time I went back she had either forgotten or had some other ideas about what I should do. I told her I only had a couple of weeks left until the claim was cancelled and she still didn't do it. So it was cancelled. The last time I seen her, after she had told me to try get the files myself because I would get more than her, I had rang my old family DR and they said I still needed a letter from her to get them. I was trying to explain this to her and she was arguing with me, not listening and trying to go back to saying I had to try get them myself. In the end I walked out fuming, all the receptionists looked down as if I was an axe murderer and I came home and sunk into deeper depression for weeks before I could fund the strength to get a new DR.

So now I just wake up every day feeling deflated and done with everything. But I'm still here trying to keep coming back to the moment, and remember to breathe.

Don't get me started on disability job providers. I've had many different ones over the years and not one of them has helped me. I have always found my own jobs and the ones they have helped me get have been completely wrong and made my health worse so I gave up on them too. Now I've just given up even trying to work and I'm stuck on this endless loop and I feel like I'm going crazy. It feels like I'm never going to enjoy my life again. I used to be a happy person. I was able to try push all my stuff aside and be an outgoing adventurous person. I used to hike and climb rocky hills and all sorts, kayak. Now I just lay here wishing my life was over. I hate the way the Government have made everything so hard in our world and I feel its only going to keep getting worse. The world has gone mad and people everywhere are struggling. I don't know how the world is going to be in ten years time. It's a scary place to be these days. But I will breathe, watch my turtles, hug my dog and try stop over thinking until one of my appointments finally get me anywhere.

Thank you for your reply. I feel really alone right now, it helps to find others going through similar 😊

[Eagle Ray]

Dear Wishtobefree,

That is just terrible and so frustrating what you went through with the doctor. I totally understand you feeling so depressed afterwards. I’m wondering whether putting something in writing to them would help, outlining that to even get the medical files from other practitioners they are requesting a letter from her first. It might be harder to ignore if you provide them with a letter or formal email.

Another possibility is getting help from an advocacy organisation. I don’t know which state you are in so I cannot recommend a specific one, but there are organisations specifically for helping to advocate for people with disabilities and health conditions. For example, I’m in WA and there is one here called Advocacy WA. An organisation like that could potentially do some work on your behalf to help you access medical files. Some will specifically help with the DSP.

Another possibility is seeing if you can get some support from a social worker through Centrelink. I know how frustrating it can be to even get through on the Centrelink phone line, so it might be easier going into a Centrelink office in person if you are able and explaining you need some support right now. I’m just guessing that the social worker may be able to help with the medical and DSP things, at least give you some support, though I don’t know the full nature of what they do. I just mention that because it’s free, as the advocacy organisations usually are too.

Basically, I really hear you. I’ve had interactions with doctors over the years that have been so upsetting. I had one doctor really wanting me to go on a particular medication for migraines that I didn’t feel completely safe with. I went to another GP for a second opinion. He was quite polite and respectful to me until I mentioned having fibromyalgia and he totally changed. He went to another room, grabbed a packet of anti-inflammatories and threw them at me and said, “Get over it”. Basically some doctors see those with fibro as malingering time wasters and after many similar instances of abuse like that from doctors I went home and just sat on my doorstep and sobbed. I’m always respectful to them and proactive with my health, yet they force this horrible stereotype on me because of how they perceive fibro in such a prejudiced way. On the positive side, I did find a really good GP in 2021 until she had to go on leave for family reasons. So there are good ones out there but, my goodness, it’s like you have to go through so many awful experiences at times

to find them. Hang in there because you are worth it.

I enjoyed reading about your two turtles 🐢 🐢 I’m glad you have them. Pets are very healing and meaningful. It’s wonderful you paint too but I understand not feeling up to it. That happened to me with playing guitar and music which I’ve struggled to get back into, even though it would probably help me. I understand when it feels too hard. I have managed to keep going with a photography interest which is the one main creative outlet now for me.

Take good care and we are here to chat whenever you need to,

ER

[Eagle Ray]

P.S. So glad you have your dog too. They are true soul buddies 🐶💗

[Wishtobefree]

Thank you so much for you suggestions. It is nice to have some kindness because I feel like I haven't had much of that lately. I actually wrote a letter to the health minister about the struggles I'm having and someone from his office referred my case back to centerlink. I had a social worker call me right before I had a DRs appt, we had a quick chat and I begged him to call me back and he never did.

I gave tried to find an advocacy service, I'm in SA, and didn't have a lot of luck finding one. I do have a wellness support person I applied for, and you get 12 appts. We go to a coffee shop and have a chat once a fortnight, he listens but doesn't do a lot else. 

The pain clinic I'm waiting for an appointment with, I read in their website that they help to assess Wether you can qualify for the DSP and hopefully give me the medical evidence I need. It sounds promising. Apparently they organise a team of people to help you feel better.

As for Fibro,,, oh my God I hear ya. I was diagnosed with fibro about ten or so years ago and I feel that bullied by DRs about it. I get the same, as soon as you tell them you have fibro they treat you like an absolute sook. I even had one DR in the city that I was seeing when I was homeless say, once you get your head right your fibro will get better. I was so upset I never seen him again. Every medical professional since treats me like I'm over reacting but oh now that I struggle to walk down the stairs in my townhouse when I wake up, it's a serious matter and makes me think that they just don't get it. What will they do when I end up in a wheel chair. I said to that last Doctor, you know I also have osteo arthritis don't you and she looked shocked and I thought we'll maybe if you listened or read my notes you would know. My fear is that the osteo has spread through my body. Last time I had a scan it had progressed into both hips and my neck and it's just going to keep progressing but because so many Doctors focus solely on my fibro and dismiss me, meanwhile my osteo is causing havoc in my body. I just feel like they don't get it unless your an old woman that can't walk or you have the big C otherwise they just make you feel like you should just get over it, give you some pills and shut up. 

What about when you become a bigger problem because they ignored you for so long. That's how I feel, our medical system is a joke. Then yesterday when I was googling stuff about the pain clinic at the hospital I'm meant to have an appointment at, I found an interesting article. The reason my appt is taking so long is because they are moving into another building. Then this article says that the pain clinic is moving into a much older building that means pain patients will have more of a struggle to get to the building and have older outdated facilities because they are building a new section and the more important services are moving into there. The article went on to say that chronic pain patients are being treated like a nuisance and being ignored. It's so true, our health isn't as important as mental health or cancer or anything else. Meanwhile I'm laying here with bursitis in my shoulder, my fingers swelling up, my arms swelling up, tingling everywhere in my feet. They just don't care. It makes me sad to think that they can ignore someone in so much pain. I even went to the hospital one day and they sent me away so I just lay in bed and can't be bothered trying aymore. Our systems are a complete joke to say the least. 

Thank you for taking your time to read my posts. I don't have anyone to listen to me, or that even cares. I do have a partner that is so supportive but that's all. Actually my dad lives in another state but we don't talk anymore due to his sphycho girlfriend that came between is so that's another sad story in my life.

I'm pretty much just over trying to get better and that's what I'm going to tell them whe I finally get an appointment, that thanks to being ignored by the medical system for so long I've given up. Just over being made to feel like a nuisance by everyone. Even my friends, I feel a deep despair inside that now won't go away. Life is shit really. My only joy is laying in my room with all my pretty things and my pets. 

Thanks again for being so kind

Wishyobefree