Interviews Part 1

So, you all know I’ve been planning to do a series of interviews with all kinds of disabled people / people with illnesses. I had a lot of volunteers, and since the interview itself is long, I’ll post 3 of them per blog every other day or so. And I figured if I felt comfortable asking these questions of other people, I should answer them myself as well. So I basically interviewed myself, lol.


So this first interview is answered by myself, Lieselot Mauroo:

How old were you when your medical problems first started?

I was about 10 years old.

What medical problems / conditions do you have?

Ehlers-Danlos Syndrome (it’s a connective tissue disorder), hypermobility type. Fibromyalgia (not officially confirmed yet), arthritis (localized to my hands for now), debilitating migraines, unidentified stomach problems, insomnia / fatigue.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I was born with the EDS, and the rest are most likely symptoms developed by the EDS over time.

How were you diagnosed and by what kind of doctor?

My rheumatologist figured out the problem was with my connective tissue, she send me to a geneticist who then officially diagnosed me with EDS.

How long did it take for you to be diagnosed properly?

Since the problems began around age 10, and I was only diagnosed at age 21, it took 11 years to get a proper diagnoses, which is ridiculously long in my opinion.

What was going through your mind when you received your diagnoses?

I was thinking how good it was to finally have a doctor believe you and give you a real diagnoses. I was happy because I thought being diagnosed meant I could get cured. Then the doctor told me there was no cure for this disease, there’s not even a proper treatment for it, and with that all my hopes of ever getting better were shattered. I was dismayed, heartbroken, I cried for hours.

Is there a cure or treatment for your illness? If so, what is it?

There is no known cure or even a treatment plan, it’s mostly pain management, and even that doesn’t help much.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

I experience pain every day. Pain in my right shoulder, my neck, my head, my knees, my legs, my back, basically there’s pain everywhere. Sometimes it’s a sharp, stabbing pain, as if someone stabbing me with a knife over and over again and then twisting it around in the wound to give it that extra bit of pain. Sometimes it’s a dull, constant throbbing pain. It varies.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I can’t exercise at all, even walking hurts, basically every movement hurts, so sport is out of the question. Maybe being in the water would help a little, but I’ve yet to test out that theory.

What are your worst symptoms? How do you deal with them?

Well, that’s hard to say, I’d say all of them. But the worst is probably my right shoulder, because that’s the one area where I never get any relief, the pain is always there.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I’ve heard of people with EDS who have little problems, and who’s symptoms are at a stable point. I’m not one of those people, unfortunately. My symptoms have gotten a lot worse in the past year, and it’s my belief (as well as my doctor’s), that it will continue to progress, and I just have to learn to accept it and adapt as it goes along.

How do you feel about having all these medical problems?

I would be lying if I said I wasn’t angry about it, because I am. I’m young and I’m supposed to be healthy and taking the world by storm, like young people do. Instead I feel old and worn out, and that makes me angry, because it’s not fair. But I’ve mostly come to accept it for what it is, there’s no use in constantly crying over it, it’d do me no good. So I cope as best as I can.

What is the worst thing about having these medical problems?

Being sick and in pain so often, plain and simple, that’s the worst part. I have more bad days than good, unfortunately. I wish it wasn’t so, but it is, nothing to do about it.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I cannot work. Not only am I in constant pain, but I’m sick so often that working really is impossible for me. It’s def. the EDS that’s preventing me from working.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

This pain’s been here since I was a kid, so I’ve gotten used to it mostly. I’d say it’s changed some in the last year, changed the way I do certain things. It’s a gradual change as the disease gets worse, I’d say.

Are you able to have a daily routine? Can you describe your daily routine?

No, I don’t have a daily routine, that’s not possible for me. I do have a system in place to try and put some structure in my life, but ultimately the way my day goes depends on how I’m feeling that day.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Yes. Like, I have a high chair for when I do the dishes, because sometimes standing even for a little while can be very difficult. Sometimes I need help during dinner cutting my meat, because my shoulder is hurting too much. I need help taking a shower or a bath, because I can’t do it on my own, those kinds of things.

Do you have any tricks to make your life easier in dealing with your medical problems?

I suppose so. The high chair for doing dishes is one of those ‘tricks’ to make it easier for me. I write a lot down so I don’t forget it. But there’s not really a lot of tricks that make it much easier for me.

Have your medical problems had an impact on your financial life?

I suppose so, it certainly would be different if I was healthy. Remember, doctor visits, ER visits, medications, they all cost money that a healthy person doesn’t have to spend. Off course I’m lucky living here in Belgium and having a good health care system, I think it’d be very different if I lived somewhere else, like in the US.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I have quite a few hobbies that keep me busy and distracted from the pain. I draw (only if my hands / shoulder allow), I do crossword puzzles, I play Guild Wars 2, I write (a blog, stories, poems, anything really), and I make fan music videos. Those are all great comforts to me during bad days.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I like to think so, yes. I try to help people with my Disability Blog, I try to help my friends in my support groups when I can. I like to think some people find comfort in that, or maybe even inspiration.

How do you explain your condition to healthy people?

I don’t, not really. I say it’s a connective tissue disorder, causes problems with joint and muscles and basically everything. I say my joints are hypermobile, but usually they don’t understand it at all, so then I show them one of my ‘party tricks’, like twisting my arm all the way around, that shuts them up pretty fast. I’m not really supposed to do that, but I do find their faces amusing when I do it.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

That I’m faking it to get attention, or that I’m crazy.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, I do feel as if a lot of people don’t understand me, especially healthy people. And how can they? How can a healthy person understand someone who’s in pain every day? They can’t, not until they experience it themselves. I’m lucky to have a husband who understands me, he’s my rock.

Are you afraid to be around people? If so, can you explain why?

Not at all, no. I don’t really like big crowds, but I’m not afraid of being around people. I like being around people every once in a while, and sometimes I just want peace and quiet.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, I have, but it didn’t really have anything to do with my illness. I was a teenager who was constantly bullied in school, sometimes even physically, and sometimes even threatened. I was a scared kid who didn’t see a way out, who didn’t realize that things do get better. Maybe not in the way you expect, but things to get better eventually. I haven’t felt this way since then, I mean I’ve felt lousy and down, but I’ve never again felt like I just wanted to give up, because I know I’m a fighter and I can get through the rough stuff.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

That’s a tough question, I want to say yes, but I also want to say no. Part of me still thinks surviving school was the hardest thing I’ve ever had to do, but as my illness progresses, another part of me feels that this is the hardest thing I’ve ever had to overcome. So I have mixed feelings about this.

Do you have a message for others in similar situations that may help them?

No matter how bad it gets, never forget that you’re a warrior and you’re fighting against something that’s trying to beat you down, but you can’t let it win. Even if the pain gets worse and the illness progresses, you can’t let it win. It can take your body, don’t let it take your spirit.

And lastly, how has this illness / disability affected your relationship with people?

I’ve lost friends because of this illness, but I’ve gotten an insight in people I didn’t have before. And I know who the important people are now, the people who support me and love me no matter what. At least now I know who my true friends and loved ones are. It’s hard to keep relationships while battling chronic pain, but the relationships you do keep just get stronger because of it, the relationships that weren’t the best to begin with, they dwindle down and die out.


This is the interview of Aubrey Snyder.

How old were you when your medical problems first started?

I was 15

What medical problems / conditions do you have?

I have gerd, scoliosis, anxiety, depression, PTSD, and I have had constant nausea for roughly a year that has yet to be diagnosed.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I don’t yet know what caused my problems.

How were you diagnosed and by what kind of doctor?

I have not been diagnosed yet, but I’m fairly certain my GI specialist came from heaven.

How long did it take for you to be diagnosed properly?

What was going through your mind when you received your diagnoses?

Is there a cure or treatment for your illness? If so, what is it?

Answer to above three questions: I have not been diagnosed yet.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Yes, I have a fair amount of chest and stomach pain from excessive bloating in my stomach.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I am unable to exercise because of my constant nausea. Exercise aggravates it to the point where I have to lie around for the rest of the day.

What are your worst symptoms? How do you deal with them?

My worst symptom is nausea. I have narrowed my diet to fruits, veggies, chicken and nuts to avoid making it worse.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I am not sure, but I believe my symptoms are stable for the moment. Since I do not have the root diagnosis I cannot be sure about the future.

How do you feel about having all these medical problems?

How I feel about being sick varies from day to day. Some days it is very difficult to be unable to be normal and do things other people my age wouldn’t even have to think about.

What is the worst thing about having these medical problems?

The worst thing for me is the inability to do theatre. This is something I have done my whole life and going without it is one of the worst things about this.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

Yes, it prevents me from working, because there are times of the day where I can’t do anything but huddle in bed with the lights off trying not to throw up.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes. I am house bound, so every aspect of my life has been flipped on its head.

Are you able to have a daily routine? Can you describe your daily routine?

My daily routine mostly revolves around diet and managing all my home classes. I am a junior and do not want to be held back a year.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

No, I don’t really need help with much except driving. I make my own food, teach myself school, etc.

Do you have any tricks to make your life easier in dealing with your medical problems?

It isn’t really a trick, but staying well hydrated can make a huge difference when managing my symptoms.

Have your medical problems had an impact on your financial life?

Since I am a minor, the bills do not affect me directly. But I do feel bad for causing my parents all of the stress that comes with having a child with ongoing medical issues.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I like to stay busy within the confines of what I can manage physically. I sing, play the cello, tin whistle and piano, and I write a lot. I hope to publish a novel like my dad.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, I have a best friend who is in the exact same circumstances as I am. It’s almost creepy how similar our struggles are. We are each other’s lifelines.

How do you explain your condition to healthy people?

Either I tell them nothing at all, or I tell them it’s like having the stomach flu for a year and a half. I usually only say that with people who clearly don’t believe it’s as bad as I make it out to be.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

“I think you’re hypersensitive.”

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, almost all the time. People can’t seem to grasp the concept of “constant”. It seems to mean “occasional” to them which is very frustrating.

Are you afraid to be around people? If so, can you explain why?

Not afraid as much as I just don’t really enjoy it. I can’t eat what they eat or do what they do and it’s a little frustrating, and difficult to explain my problems without sounding like I’m whining.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Multiple times. It almost always happens when someone close to me has eluded to me faking it or the fear that doctors will stop seeing me because they think I’m exaggerating.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes. I’ve had a pretty good life up till about a year and a half ago. This isn’t something I can just phase out of. It may be with me for the rest of my life, which is hard to think about without becoming depressed.

Do you have a message for others in similar situations that may help them?

Yes: it sucks. It really does. But we have an understanding that people who have not gone through this will never have. We will never judge a sick person on their behaviour on a bad day because we know what it’s like. “I’ve been there” sounds cliché to people who haven’t been there, but to us it’s the best we have.

And lastly, how has this illness / disability affected your relationship with people?

It strains my relationship with some people, but strengthened friendships with others. It depends mostly on whether or not they can be sensitive to my disability while treating me like a normal person.


This is the interview of Teresa Walker Stockton:

How old were you when your medical problems first started?

I was in my twenties

What medical problems / conditions do you have?

Fibro, osteoarthritis, RA (rheumatoid arthritis), DDD (degenerative disk disease), JHS (joint hypermobility syndrome), narcolepsy, 4 herniated disc, bursitis on my left hip, 3 hip surgeries, 1 neck and 1 back. I have major depression and anxiety as well.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

My arthritis is hereditary. The rest I have no reason why.

How were you diagnosed and by what kind of doctor?

My fibro was diagnosed by a rheumatologist. My osteoarthritis and my JHS was diagnosed by my primary doctor.

How long did it take for you to be diagnosed properly?

My hips and back over a year, some of it was diagnosed in my twenties, my RA in 2013. It took 6 months for my Narcolepsy to be diagnosed.

What was going through your mind when you received your diagnoses?

What treatment I would receive and if I would still be able to work.

Is there a cure or treatment for your illness? If so, what is it?

No, there is no cure for anything I have.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Yes, my pain varies from day to day. I don’t really know what helps, haven’t been able to get it regulated. I usually have some kind of headache as well as touching my head itself hurts. Very tender, deep pain like my body weighs a ton as well as some sharp pain.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I do try to do small amounts of exercises, like Pilates. It can cut back on the heaviness.

What are your worst symptoms? How do you deal with them?

Feeling tired all the time, and my body is so heavy just as an aching pain. I have prescribed medicine that helps.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Mine keep getting worse.

How do you feel about having all these medical problems?

Mad!

What is the worst thing about having these medical problems?

I can’t do what I want to anymore, my life isn’t mine.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

Yes, it prevents me from working.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes a lot, I used to be able to go anywhere and wasn’t afraid of climbing stairs and rocks. I lost my home cause I couldn’t work and had to live with relatives. Now I am living in a basement.

Are you able to have a daily routine? Can you describe your daily routine?

I don’t have a routine anymore. If I have Dr. appointment I get up in enough time to take my meds and go to appointment. Otherwise, I sleep till I wake up, take meds, bathroom and lay back down.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

I need help with picking up small things and reaching, could use but don’t have help with putting on my pants as my right legs has issues.

Do you have any tricks to make your life easier in dealing with your medical problems?

Sitting with my girls. They relax me and calm me down.

Have your medical problems had an impact on your financial life?

I have medicaid and thank God for that!

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I am trying to start again with my crocheting and horses. They take my mind off all the pain to another place.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I feel like I do better at helping others then I do myself.

How do you explain your condition to healthy people?

Most of the time I don’t unless they ask.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

My parents and my oldest son tell me its all in my head and I am too young to be sick, and I just need to find a job and get back to work.

Do you feel as if people don’t understand you? If yes, can you explain why?

Yes, I feel that since they haven’t been to all the Dr appointments and the therapy that didn’t work, they don’t see where I am hurt.

Are you afraid to be around people? If so, can you explain why?

I am uncomfortable around a lot of people I don’t know or act like they are better than me. Makes me feel inadequate.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

I have been and am at rock bottom but quitting or killing myself was and never will be a thought.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes, this is something I can’t fix or make better. I have had it rough but came out of it, not with this.

Do you have a message for others in similar situations that may help them?

Always pray. Get as much knowledge as you can find out about what is happening to you with this illness so there are more able to understand and help you. Then to set a schedule and do your best to stick to it and rest.

And lastly, how has this illness / disability affected your relationship with people?

I am single and I don’t care to be with anyone. I love to go to festivals but can’t get anyone to go with me. People don’t believe that I have an illness, so they just look at me as if I am nothing; that is how my parents feel.


So those were the interviews for today, more to come soon. 

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

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