Job hunting with a visible disability

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. 

The New Year often brings new resolutions, new habits and lifestyle changes. For some of us, that also brings a new job, or the desire to change jobs. But what happens if you’re disabled, or have a “visible physical difference” such as XLH symptoms and short stature? How do you challenge the first impressions formed by the interviewers?

Recent studies have suggested that people with disabilities are more likely to encounter employment discrimination. Experienced candidates with disabilities face 34% less employer interest, possibly due to increased investment risk, according to a report authored by researchers at Rutgers University and Syracuse University.

It’s a sad statistic and a damning condemnation of modern life, but don’t let it discourage you! We can take steps to get past these issues. How do we make ourselves more attractive to potential employers? In my own experience, it isn’t easy but can be done. I’ve always applied for jobs I felt capable of doing. And when called for interview, I portrayed myself as the best candidate, as everyone does.

Naturally, I came up against the first impression issues. But sometimes you do meet a prospective employer who sees your potential first. The last job I worked at was one such example. In the first interview, they quizzed me about my education and work experience and only at the end did they ask about my physical condition.

I did what all of us need to do in these situations. I was honest about my illness and limitations. Since it was an office-based job, I knew my physicality would not be an issue in my job performance. I told them, truthfully, that I didn’t need medical monitoring (at the time) and I wouldn’t need to take time off. During the second interview, they asked some more questions and then brought me on a tour of the building, including the warehouse and the upstairs office where I would be based. Once they were satisfied that I could easily walk to the warehouse and use the stairs to my future office, I was introduced to the staff and told I’d have the decision later that day. Within two hours, I got the call telling me I was to start the following Monday!

Finally, some thoughts and tips if you’re job hunting:

·        Be honest, if asked, about your condition

·        Be realistic about your physical limitations

·        Be sure you can do the jobs you’re applying for

·        Be certain you understand the extent of your condition

·        Know the company and the job requirements

·        Don’t be offended if they offer to make workplace allowances for you!

Good luck in your job search!

Changing mindsets

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. 

“Wait, I’m not disabled!”

How familiar is that statement among XLH patients? Very! Or at least it is in my life. While I understand and accept that I have a life altering condition, I’ve always been stubbornly proud and hesitant to admit that I do indeed have a disability or handicap. The same stubborn pride that I’ve seen in other XLH patients; the thing that drives us all forward and never allows us to give up on ourselves or each other.

However, as I grow older and my condition progresses, I’m finding it increasingly difficult to continue saying I don’t have anything more than physical limitations. The truth of the matter is, while my condition isn’t as serious as others, I do in fact, have a physical disability.  

But, accepting that truth doesn’t mean I have to give up my stubborn pride!

It is a streak that makes me always want to do things for myself. I carry my own laundry basket. I drive a car with a manual shifter and no control modifications. I can cook, clean house, maintain the car and do a multitude of other things that a more severely disabled person might not be able to do. For that, I’m hugely grateful. Yet, I must still accept that there are a great many things that I am simply physically incapable of doing.

I cannot walk for long distances, let alone run. When I’m working in the kitchen, I have to sit down every so often. These, and others, are things I cannot do. I do not have the physical ability for them. That’s basically what a disability is, and exactly what I’ve been trying to get my head around these past months and years.

It truly bothers me that handicap and disability is so heavily stigmatized. In a world where equality is at the forefront of daily life, we still have inequality and discrimination towards those who aren’t “normal.” Perhaps that’s why it has been so difficult for me to accept that I have a disability. Because of the perceived stigma attached.

What I do know is that we must strive to show people that while we may have a physical disability or handicap, they don’t change who we are as humans. They don’t make us less useful or relevant in modern society.

This change in mindset came about for me because a friend asked what government benefits I receive for my disability. Which is when I exclaimed, “wait, I’m not disabled!” Their acceptance of me and the things I can do made me realize that while I am disabled, I am still relevant and useful. And that will make it easier for me to accept the help I will most certainly need in the future.

I have to accept that my physical limitations are now disabilities. Yes, I am disabled. And I’m okay with that!

If the shoe fits

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. 

I was always a difficult person to buy shoes for. My feet are wide, so I generally had to get the next size up. I never truly understood the importance of having comfortable shoes as an XLHer. And now that I have you hooked, allow me to explain.

Many years ago, I slipped in the shower and broke the fifth metatarsal of my right foot. The so-called “soccer player’s injury,” or at least it was, according to the orthopaedic specialist looking after me.

Over the course of my recovery, I had a fiberglass cast and cast shoe. Both combined to have the effect of giving my right leg an extra inch in length, which leveled out my hips. Rather miraculously, this lead to a significant reduction in my back pain. So, I asked the specialist and he referred me to an orthotics clinic who outfitted my shoes with a raise designed to do the same job as the cast and shoe.

While my walking and back pain improved, it wasn’t perfect. And I didn’t understand why until I moved to France and my now well-worn shoes finally started falling apart. I got them re-soled but that made them increasingly uncomfortable. So, when a lace snapped, I put on some old trainers or running style shoes. Within a day or two, I felt more at ease on my feet and started walking better. So, I bought new trainer style walking shoes. They were cheap, but they were also a stop gap.

Again, my walking improved, as did my stamina for standing in the kitchen. However, as is inevitable with cheap shoes, they quickly became uncomfortable so on the recommendation of my Dad I researched some specific walking boots and went to try them on early in January. Again, I ended up buying a couple of sizes bigger than normal, but apparently French feet are smaller than Irish ones!

Happily, my new walking boots are far more comfortable than the old ones. And once again, I’m walking easier and have more stamina while standing in the kitchen. But the best part of this story is that I’ve drastically reduced my reliance on NSAID pills to manage my back and joint pain. I’ve gone from two to four pills a day to two pills a week. Although I do take one or two when I’m working.

I never realized that footwear could have such a profound effect on mobility and stamina. While I won’t be walking a 10K any time soon, I’m very grateful for the improvements. So, if you have similar issues, please consider trying some different shoes. You might be surprised!

Describing pain

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. 

“Can you describe the pain for me?”

This is a familiar, and often frustrating question for both patients and doctors. Especially for many XLH sufferers who invariably deal with chronic pain during their lives. How do you describe something to a medical professional that simply defies explanation? And how does a doctor interpret the varied phrases and descriptions provided by the patient?

I’ve read stories of patients becoming upset by the inability to accurately give details to their doctor. The doctor’s understandable frustration never helps, either. Nobody is at fault, of course. Pain is different for everyone. My daily pain varies in location, intensity and type. And my mother describes her XLH-related pains differently.

For example, I have osteoarthritic pain in my hips. Because the joint can stick and click sometimes, that can be very painful. But, what kind of pain? I’d say a burning ache that builds to a sudden stabbing crescendo, followed by blissful relief once the joint clicks and frees itself. As for my back pain, that’s different again. At rest, I have a mild to dull ache in the lumbar muscles. If I’m working in the kitchen, it builds in intensity and spreads across my mid back and then becomes pinching with every movement. And at that point, I know to sit down and rest if possible.

I’d almost liken the effort of describing pain to a beloved pet dog trying to tell us they’re not well. We know the signs, such as a limp when the dog is walking, or raising a paw to have it checked, or even not eating. But how do they explain it?

I think both patients and doctors need to find common ground. And one brilliant article I read recently by Christine Miserandino describes “spoon theory.” It is something a lupus sufferer created to describe her condition to friends and family. Spoons represent her energy on a given day, and every task takes one spoon away. By having common terminology, we can make it easier for all. After all, understanding our bodies and pains more won’t hurt, will it?

The maturity of XLH patients

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. You may remember him from a few months ago, when he shared his experience with some confusion over whether a symptom was XLH-related or not.

"Andrew, you’re so serious."

I've heard that phrase most of my life, from many different people. They seem to think I never have any fun, but I've had plenty of fun throughout my 38 years on this planet, and some amazing experiences. I've driven a single-seat race car on a race track, I've stood next to a Formula 1 race car as they fired up the massive V10 engine, and I've had a flying lesson in a helicopter.

And yet, I’m labeled a "serious" man.

I've come to realize that being serious is actually a different label for maturity. Growing up with XLH has left me with this perceived maturity. And I think this is something that is quite common with anyone diagnosed with a chronic medical condition, who has to go through life dealing with all the issues it throws at you. A child with a chronic illness really does have to grow up quickly. In my case, I underwent multiple surgeries, spent weeks at a time in hospitals and visited my endocrinologist as often as twelve times a year.

This level of maturity, at least in me, has had a knock-on effect on how I deal with the various traumas life sends my way, too. I've lost friends and family to illnesses, I've been hired and fired from jobs, I've dealt with the end of a relationship, and most recently, I've watched my much loved doggie pal’s health deteriorate until she finally passed on.

To look at me, you might think that I was uncaring about all these things. Nothing could be further from the truth. At funerals, I’m deeply cut up inside. When my dog passed, I cried in private. When my now ex-girlfriend ended our relationship, I bounced between feelings of anger, hurt and sadness for a while. But eventually my "maturity" kicked into high gear. My coping mechanism asserted itself, just as it always had during every physical trauma I've been through.

People have asked me how I manage to cope so well, and wonder why I’m not more visibly upset when something bad happens. I think my XLH has conditioned me to be this way. It really is no bad thing, because when someone I care about suffers a trauma, I can be the rock they need to lean on. As someone who has been leaning on other people his whole life, it's really nice to be able to return the favour!

XLH symptoms ... or not

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine businessperson and a writer, with aspirations to become a novelist. 

When living with a chronic illness like XLH, we’re often tempted to associate additional symptoms or conditions with our primary diagnosed complaint. Sometimes, though, it's the doctor who doesn’t fully understand XLH who tries to find a way to tie in the additional symptom.

Back in 2010, I was watching a TV show with a focus on men’s urinary and prostate health. It dealt with things like how to examine one’s own testicles for suspicious lumps, the symptoms of urinary problems and the indicators of a potential prostate complaint. About a month later, I started having occasional pain whilst going to the bathroom, and a week after that, I noticed some blood in my urine. Given this technological age we live in, I went online to the website for the show I had seen. My symptoms seemed to indicate a potential urinary infection or could also possibly indicate a problem with my prostate gland. Being only 34 at the time, I thought I was too young to have a prostate problem.

I checked a little further and found a reliable medical site that seemed bent on trying to convince me I had prostate cancer! Both information sources suggested that it was far more unusual for a man to have a urinary infection, which are more commonly seen among pregnant women. The online advice was that I should immediately increase my intake of water and see a doctor at my earliest chance. I couldn’t get to the doctor until the following Monday, and my symptoms progressed until I was nearly doubled over with pain in the one anatomical element that a man never wants to have pain in!

I made the mistake of going to a health insurance clinic, as my doctor had retired. When I finally got to see a consultant, I was poked, prodded, examined and questioned. He was convinced that my symptoms were linked to the XLH, and that I was potentially looking at the early stages of kidney disease. He seemed puzzled that I didn’t have pain other than when urinating and wondered if I didn’t have kidney stones. I’m no doctor, but I knew for a fact I didn’t. Next came more tests, blood work, urine test, and even an ultrasound of my kidneys.

Since I didn’t have insurance, I had to ask him to stop the testing and just write a prescription for the antibiotics, which cleared up the infection. Even so, my bill was a staggering €550 euro or about $700US. 

I learned quite a few things that day. First, you need to find a doctor well versed in XLH, or at least someone willing to research and listen. Second, online diagnosis tools can’t be your only source of information on medical conditions. Finally, and most importantly, I learned that my kidneys weren’t pregnant!