• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Im soo ANGRY at what I just found out

After being so sick for 14 years while living in the same town (except for 6mths I lived with a doctor elsewhere), I just found out that there IS disability services for people like myself in this country town after all. Why have my doctors NEVER told me about this!!!! They are the ones who refer people to the org I just got told about yesterday.

The doctors here even supported me move out from this town and I had to put myself onto a priority housing transfer list thou I didnt want to move from my home town Ive been in since a young child, just so I could get help and there was support here of all kinds all along...

support to take me to medical appointments in next town if I needed, this org does home support and garden help, it even takes those on disability on camps so we can have outtings.

Ive gone throu so so long throu sheer hell when there was a support service here all along which the doctors werent telling me about and I can see now the doctors were trying to get me to move and not supporting me to be able to stay here, just to get rid of me.

I feel so darn angry right now.. all this hidden from me as they dont really believe one is sick when one has ME/CFS. This org started in my tiny country town in the 1980s apparently and then enlarged has spread out right throu different places in the state. (I really dont know how I didnt know about them).

All the lies doctors and other orgs in past told me "We cant get you help here as there are no services available for you".

(Disabilities SA told me in the past there was nothing really they could do for me and didnt get me support.. and the Mth Barker mental health in the past just kept refering me on...this is the first time a org has mentioned this other support org to me).

Dealing with this illness and the discrimation done to you.. sure puts one on a roller coster of emotion. I want to cry, I want to yell.. this is so bad and not fair. This treatment of us is so so wrong!

Is there a way to sue for discrimination to help stop this happening to us???? or do those who are supposed to support us allowed to have their own opinion that ME/CFS is in our heads and hence treat us like crap??

Im so glad I nowdays at least have the energy to start screaming my head off at the unfair treatment instead of like basically laying down and almost dying cause I was at the time way to sick to speak up and do anything about it or my situation.

With being this little bit better then I used to be.. hopefully I can help change this situation for myself.. but its not fair that when we are at our worst.. we are completely powerless to do anything about the unfair treatment we recieve. The sickest of us probably end up getting the worst treatment due to being the most vunerable.


Hi tania, I don't know that you can sue, but you should contact the discrimination tribunal to find out if you have a court case. They wont get more than a slap on the wrist, but what they have done will then be public. Bye, Alex
I'm SO glad you've found that organization Tania. It is totally true ME patients don't fit into the tidy little boxes so no one wants to help. My husband's own Doctor was even hesitant to sign the form so my husband could take the handicapped bus to medical appts when I was at work and unable to take him. The alternative is the public bus system. As if John could wait at a bus stop and sit on a bus while it went through a whole long route, thus making a 90 minute round trip a 3 or 4 hour round trip. argggh. Most doc's just don't get it. Luckily for us, the person handling intake at the bus system has had other ME patients, so totally understood.

I hope you can follow Alex' advice re: discrimination board, but know how much energy all that stuff takes. It is so good to hear you are feeling a bit better now to deal with it.
pamb..So glad to hear that your husbands doctor ended up signing those forms. Im going to take a disability parking form into my CFS specialist with me tomorrow.. really hoping he fills it out (but have my doubts he's going to). We keep ending up having to park in places we shouldnt due to me collapsing.

Alex.. yes I would like to follow that up if I was more up to it, just struggling with too many things right now which need sorting out

Blog entry information

Read time
3 min read
Last update

More entries in User Blogs

More entries from taniaaust1