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Living with Psoriatic Arthritis (PsA)

Help, I Need Somebody, Not Just Anybody

From: Merl on TBI

Having a rare disease or condition can take over your life. It can also limit your entire outlook to the point that you lose all perspective. That is, if we allow it. In my former life I was a living skills teacher, helping people with disabilities to live a full and productive life with a level of independence. When I say “a level of independence”, of course that level varies for each person. Nobody, not even the healthiest amongst us, is completely independent. We all need help of some sort, whether that’s for basic services such as electricity or more complex needs such as health care. So from the start, the idea of complete independence is a fallacy. We all need to call on some services to make life a bit easier.

Figuring out where we need help, though, can be difficult. A simple way of looking at the question is by sorting our “wants and needs”. Needs, of course, take priority. We all need sustenance, we all need food. I may crave a la carte, but I’m not a great cook. With help, though, I can learn. Whatever, I need food! Breaking that down further, how do I get food? Simple: I go to the supermarket and I buy it. Simple? Can I walk there? Drive? If the answer is “No”, then I need assistance. That’s not a sign of weakness, in fact, far from it! It’s a sign that we have thought about our needs, and and established that we need help to meet them.

There are services out there in our communities that can help us meet those needs when our conditions limit our ability to do so independently. I’ve seen a sign from a service provider “dis-ABILITY”, with the focus on ability. A good community service is one that offers help services with a “Do with, not for” approach. And that’s exactly what we need.

But look out! Services that “do for” can limit our independence and erode our self worth. “Use It or Lose It” springs to mind: if you don’t use the skills you have, you won’t have them for long! It can be much better for our own self worth to maintain what skills and abilities we still have. But we need to do so with the insight that at times it’s not always possible: our conditions can limit our ability.

A PCP, GP or family doc is a good place to start: they often know which services are available within our local area. Of course, networking with the services is a must. Whether you qualify or not can vary from service to service: for example, some may offer services only to seniors, while others provide services only to the physically disabled. Sometimes you need a doctor’s referral, so it’s important to know whether you meet the criteria, and that you can provide documents proving that if needed.

Obviously, no help provider can offer everything! the lawn maintenance service may do a great job at looking after your yard, but may be unable, or unqualified to fix that drain. Often they are restricted by qualifications, legalities or funding requirements, so be sure that they can meet your specific needs!

Making matters even more complicated, some agencies specialize in coordinating a group of services. These service providers can give you access to a “whole-of-life” service, and sometimes they network with other agencies to achieve that. As convenient as that may sound, it can also pose problems if they restrict your access to service providers outside of their usual network. So be sure that you keep some freedom of choice if you decide to go this route!

Besides practical help, there are also agencies that have social programs. If you have an illness or a disability, we don’t need to tell you about the burden of isolation that you can suffer. Ben’s Friends provides peer support in virtual communities, but your local municipality may have programs where people can get together and socialize face-to-face. From low impact physical activities to transportation, it’s just a case of figuring out who offers what. And if you can do that before you really need it, your life will be much easier!

Naturally, we hope and wish that we will never need such supports. That’s not the reality, though. Chances are that at some point, many of us probably will. Rather than waiting and finding yourself stuck, it’s smarter to investigate what’s available and what help you’re eligible to receive (along with possible details like criteria, referrals, and waiting periods) before you’re desperate. Keep ahead of that curve!

You’ve heard it, and maybe even said it yourself: “Well, there’s people more in need than me …” As respectful and generous it may seem to put others’ needs above our own, the reality is that those services are there to help. As proud as we may be, if we need help to live an independent and satisfying life, we should use every service that we can to maintain that. Our independence, mental health, relationships with friends and family, and our quality of life are important. So use the help that’s available to your advantage!

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I grew up with disabled people, my Mum who had MS very badly and my grandma who had some form of arthritis and was permanently exhausted (I wonder what that could have been?) and then dementia. I guess I was a ‘young carer’, a category which didn’t exist at the time. I left home at 16 because I couldn’t cope any more at close quarters, but continued to look after / look out for my Mum until she died when I was in my mid-30s. I was often rather inept, clumsy and bad-tempered but I loved her. I know just how difficult life can be with a serious disability.
Given this history I feel very privileged to be as physically able as I still am, I never take the abilities I have for granted and enjoy them enormously. I am also terrified of the prospect of disability and appreciate your wise words.

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Thanks Sybil
Having worked in the disability sector for 10yrs+ and then being disabled myself, I’ve seen it from both sides, so this has given me a bit of a differing perspective on it all. I have gone to people’s homes to find that, in reality they needed such services years prior, then needed to pick up all of the pieces to assist them to get back to some sort of ‘normal’. It’s much easier to start early with a few pieces than to pick up a few hundred shattered ones. No one ever wants to be disabled, but we aren’t in this position by choice, the sooner we can recognise we need help the better for all involved.

Merl

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