How much of your health issues/disabilities do you share with others? *Rant included*

[alter-real]

First of all, I do want to vent. If you want to skip the rant, you can move down to the last paragraph.

I really wish that trainers, who often have a great deal of strength and physical stamina in spite of injuries and difficult times, had more empathy for people with serious illness. Managing a chronic illness is not the same as pushing through an injury or temporary lack of fitness (I have done both). I have MS as well as a number of other significant health issues. While I try my best to not let it affect the way I live my life it inevitably does and although it’s relapsing-remitting it gets just a little worse every relapse to the point that I now can no longer drive, for example. My world has certainly become a lot smaller over the years and I try very hard to not be embarrassed about it or let it limit me any more than absolutely necessary. At this point I’m no longer able to ride the more challenging types of horses that I used to enjoy. I wish to continue riding at the upper levels, but will need a special horse. I’m now horse shopping and I try to make it as clear as possible to sellers what I’m looking for in a horse, without overburdening them with personal details. I have one leg that has very little strength in it and can have vertigo, slow reaction time, etc. - however, I don’t look bad when riding and can usually bring out a lot in a horse even when I might feel somewhat disoriented in the saddle on a bad day. I’m working with a wonderful trainer who agrees with me about what I need in order to reach my goals, so I am not being unrealistic in my expectations. We work on the principle of “maximum from the horse, minimum from the rider” and my focus over the past year has been refining the use of the aids so that I can continue to ride at a high level despite being physically infirm.

A trainer (BNT) who I rode with a few times in clinics had a horse for sale a few hours away so I went out there to see him today. The horse was very nice and suitable in many respects, but more of a “push” ride and 10 minutes into riding him I was very tired & not really enjoying the ride. Not all rides will be amazing, no matter how great the horse, but when I try out a new horse I need there to be some “spark”. It took some courage to ride a new horse in front of others, since I’m acutely aware of my deficits and also a bit rusty (haven’t had a horse to ride in a few months). I generally don’t like to discuss health issues (anonymously online is a bit safer ) but have decided to approach it very matter-of-factly and explain what I need in a horse. Most people are gracious about it, and this trainer has been in the past when I lessoned with him on my own horse. However today when I came to a halt, thanked him for his time, praised the horse’s qualities but explained he was a colder ride than I like and took more physical encouragement than I had in me, the trainer told me that if I expected to find a horse that didn’t take a physically strong rider I’d never find one. Well, I have ridden quite a few of them and just retired one that I rode for 10 years who is light as a feather, so I beg to differ. But I didn’t say any of that, just told him that if that were the case I sadly did not have any way around the matter because of my own limitations. It is not as if I am happy about this, after all, but I made a joke poking fun at myself to lighten things up. I told him I’d get a little more fit muscularly (sitting the trot better, etc) once I get back to riding more often but wouldn’t likely become particularly strong and would probably get worse over the years. He then told me I should go running every day. This is where it started to get pretty uncomfortable. I told him that was contraindicated for my condition but I appreciated the suggestion. He told me, “no it will help your…sickness, whichever one it is I can’t remember, if you exercise more. Sitting around won’t help.” I told him that I was following my doctors’ advice and that gentle exercise, as opposed to exertion or being sedentary is the best for me. That was why I was continuing to ride, after all, to keep myself moving. If doctors ever tell me I need to increase my activity levels I will consider it. He then ridiculed the fact that I was listening to the doctors and said that if I just listened to them I’d just sit on the couch all day eating chocolate. I have NO idea where that came from. In fact, now that I type it out it’s more laughable than insulting. At the time, though, I was shocked. I just couldn’t believe that someone who admittedly did not even know what my health problems were, had just told me I should ignore my doctor. I wasn’t even asking for advice, I was merely trying out a horse, and was already in the uncomfortable position of having to share my own weaknesses/health issues because it was relevant to the situation - it certainly was not open to discussion. Anyway, my eyes widened a bit at that but I managed to change the subject and got myself out of there as soon as I could. It was mortifying, though, to be talked to like that since I already feel so sensitive about all this.

I already plan to distance myself from this trainer but I’m also inclined to stay more tight-lipped about health issues. Bear in mind that I’m a very private person - very few of my coworkers and fellow boarders know about my health problems; I only tell those who I feel “need to know” but am admittedly not always good at figuring that out right away. With sale horses in the future I can just tell people what I’m looking for and if I don’t feel it’s a fit I will just move on without excess explanation. When I go to a clinic, though, I’m still uncertain on how to find a balance between not explaining enough and leaving people in the dark when the information could actually be helpful, and over-sharing and allowing boundaries to be crossed. This is not the first time I’ve encountered problems with trainers not respecting my disability, yet on other occasions I’ve had trainers actively encourage me to tell them if something wasn’t working. How do others handle this?

[downen]

As someone who also has an “invisible disease” (Addison’s Disease i.e. Adrenal Insuffienciency), I can relate to what you’re going through in terms of the ups and downs you feel, and the impact on your riding and subsequent adjustment of your goals.

However, I gave up expecting people to understand or even have empathy for what I am going through, including my immediate family, a long time ago. They JUST.DON’T.GET.IT. And never will unless they had to experience it themselves. Horse people can be worse… I’ve found many horse people are into horses because they are lacking in certain social skills (please don’t get on my case for this statement COTHers, I would include myself in this category to a degree).

For me, I’ve come up with a standard disclaimer: “I can’t/wont’ do this/that because I have a medical condition” (most people have never heard of Addison’s so why bother mentioning it) or sometimes I simply say I have MS because I was actually diagnosed with “probable MS” before my adrenal disease was diagnosed, and more people know about MS. That’s it, no need for further explanation. If Mr. Pushy Pants trainer said to me what he said to you, I’d simply say “Thanks, but I prefer to get my medical advice from someone who actually went to medical school,” and cut the conversation short. This person was clearly clueless, so why waste the time?

I applaud you for keeping riding and pursuing your goals, and the horse you are looking for IS out there, it just may take a bit longer to find. Riding is great therapy for MS, so keep looking until you find that perfect match that makes being in the saddle a joy, despite the challenges. As far as the other stuff, horse people can be super-judgmental, so keep on doing your thing, listen to the people whose opinions you value, and shut out the rest of the noise.

[RMJacobs]

OP, I sure understand. I can’t tell you how many times I’ve suppressed the urge to lay into someone who lectures me about my disability and what I can or can’t do. It’s very insulting for those of us who already push the envelope as far as possible.

I wish I had a snappy comeback for those situations, but I get too mad and end up just walking away.

Rebecca

[walkers]

There is a article with the title “But you don’t look sick”. Its a great explanation of how we feel who have these “hidden” illnesses but also gives the perspective of the people who don’t get how it feels to be chronically ill . Even good friends often forget that I’m late to a ride because getting ready takes me so long . They don’t get how one day I am strong and have energy and the next I can’t saddle up without help. To be fair its really hard for healthy people to understand whats going on for a chronically ill person. Since I ride with my SO it often appears that I am just a spoiled selfish female who lets him take care of her. I have always been a fiercely independent soul therefore I just can’t seem to adjust to the new me.
On good weeks I even “forget” i have health problems and get surprised every time it comes back. I can’t get a diagnosis so I can’t even tell my friends whats wrong with me. A list of symptoms is not a pleasant conversation.
Anyway we do need to realize if people can’t SEE that we’re sick its very hard to remember and understand why we act the way we do…
Rebecca , sometimes just saying “I’m sick, what do you know about my life”?I or on a lighter note “I’m sick ,want to trade?” this usually straightens the person up and if it doesn’t then they are jerks you don’t need to be around!

[Gloria]

Wow. That trainer is … an ass? Lack of tact? I used to have a condition where during that two to three days of month, I would suffer debilitating pain and loss of blood to the point where I felt I could just keel over and die. Unfortunately my horse shows seemed to always coincide with those two days. Even more unfortunately was that I was such a die-hard optimist, that I always believed “it won’t happen this month” when I submitted my show entry. I was a fit, healthy looking woman otherwise so I was criticized for being a princess at horse shows a lot. lol. “You need to tough it out” was the general comment I received.

Anyway, maybe you can tell the potential seller, or clinician, “I have an illness that has rendered me physically weak. There is no cure for it. We can only manage it. So the horse I need is the one that is responsive, and does not constant leg pressure.” If that person still cannot get the hint, and still get on your case, I would tell them very bluntly, “I am not willing to discuss my medical condition further. All you need to know is the kind of horses I need. All I need to know is whether you have that kind of horse.”

[Color_of_Light]

Alter-real, I am so sorry that that trainer was unprofessional, rude and lacked empathy. What he said is ridiculous and uncalled for advice.

The problem with telling someone you don’t know that you have a chronic illness or injury it that they don’t get it. In response, you can be met with insensitive and rude comments or suggestions, just like the OP experienced. IMHO (and I have more than one chronic illness or injury), a stranger does not need to know about your health issues. Unless a person has the exact same health issue, they have no idea what you are going through. All a trainer or seller needs to know is exactly what you are looking for in a horse.

Buyers state their requirements when looking for horses. “I only want a chestnut mare, 16.3, with a chestnut mare quirky personality, must be bomb proof, at least 3rd level”. Seller shows you a bay gelding, 17.1, rarely spooks, is PSG. Buyer says “Thank you. Sorry, lovely horse, but he is not what I am looking for”. The end. The OP only needs to state exactly what she is looking for. “I am looking for an FEI horse. Must be very light and responsive to the aids, but never spooky. What I mean is, the horse must be light in my hand in self carriage, and must stay in front of my leg. He cannot require strong constant leg or a heavy weight in my hand. He must be 100% reliable, level headed, and not spooky. Must also do 1, 2, 3. Deal breakers are A, B, C. Does this horse you have for sale meet all of my criteria? If he does, can you explain?”.

For clinics you could say something like “I have some physical challenges that have flared up today. I might need to take a few more frequent breaks then other riders. (or, I’m not up to doing “…” today, but would love to work on “,” instead.). I hope you don’t mind. Is this okay with you?”.

[piedmontfields]

@downen

As someone who also has an “invisible disease” (Addison’s Disease i.e. Adrenal Insuffienciency), I can relate to what you’re going through…
However, I gave up expecting people to understand or even have empathy for what I am going through, including my immediate family, a long time ago. They JUST.DON’T.GET.IT.

I agree with this summary. I have an invisible rheumatoid condition but look quite functional. However, every day I truly have to manage how much I do, or I will pay for it for many days afterwards. One topic that always comes up at the barn is “why don’t you show? You and your mare would do so well.” Well, spending an entire day or weekend showing would completely exhaust me. It simply is not worth it. I ride for fun and for the joy of training and progressing. I do enjoy clinics if I can manage the timing (some take too much travel or management energy for me to enjoy). Hence, auditing is often easier for me, as I can adjust my responsibilities and timing.

But people who don’t deal with these kinds of conditions simply don’t get it. “You don’t look sick!” Sigh!

[Jackie_Cochran]

Hi alter-real, I also have MS, which has affected me for most of my life. I was finally diagnosed 24 years ago. I was disabled 22 years ago by my Betasaron attack (electric wheelchair and all), taken off Copaxone by my neurologist because I was deteriorating daily, and I took myself off of Gilenya last year because I was rapidly deteriorating to the point I would have NEEDED an electric wheelchair again.

I do not drive a car either, just too exhausting. I can only stand riding about 30 minutes or so at a time before I am exhausted. I have bad balance (front to back, side to side), I am very weak, my proprioceptive sense is quite bad, I am uncoordinated, something in extending my elbows does not work, and occasionally my limbs twitch uncontrollably.

I find that even sensitive horses prefer a “push-ride” from me. Alternating my legs at a walk, “pulsing” with both legs when I sit when I post the trot and using my inside leg at the canter for impulsion, the horses WILL NOT MOVE OUT unless I use my legs. One day I realized that when I use my legs I am automatically re-centering myself in the saddle which the horses like since my balance is sooooo bad and I do not realize that I am starting to slip to one side or the other. The horses also KNOW that something is wrong with me, and I find that I have to convince the horse that, on that moment of that day, I CAN ride the trot or canter. The hesitations are not so much “I will not obey you” as they are “are you sure that you can ride this movement without falling off or hurting me (the horse) with your hands and heels?”
As an example, I had to push ride a really, really sensitive Arabian gelding who was notorious for bolting under less than perfect riders.

When I go to a new stable I am honest about my considerable physical limitations, both to the riding teacher and to the horse. With the horse I go up, start communicating (hi horse), then I stand still, relax, “open up my heart”, stop thinking, and let the horse sense me. Then I promise the horse that I will do everything in my power not to let my physical imperfections hurt the horse, with hand, leg or seat. This seems to work for me. I tell the riding teacher that I can only ride for 30 minutes, that I need frequent rests, and that my balance, coordination, and steadiness are quite bad but I’ve learned how to keep the horses happy under me (mostly by not being too ambitious!)

Three modern products have really helped me with the horses.

Since my legs are so weak I have to use spurs, but when the weather got hot my riding teacher would take my spurs off my feet when my legs got too unsteady. I finally found out about the Spursuader spurs (http://www.spursuader.com), and my riding teacher lets me wear them all year. These spurs save me a lot of energy and I do not have to worry about hurting the horse with them.

For my balance I found the RS-tor (http://www.rstor.co.uk.). It is a “gadget” that attaches to the stirrup bars with a strap that the rider holds. It is designed so that if the rider falls that the rider will pivot and land on her feet. I haven’t fallen in years, but the RS-tor brings me great peace of mind, which relaxes my body making it easier for me to relax into the saddle and stay secure. This is not a grab strap, I can hold my reins normally and I do not have to twist my body to use it.

For my exhaustion, when I groom the horse I use the Hands On Grooming gloves (https://handsongloves.com). These gloves shorten the time I have to spend grooming the horse, the horses get clean, and the horses LOVE, LOVE, LOVE the feel of these gloves. The horses LIKE seeing me when they know I am using these gloves, and the horses relax instead of giving me suspicious glances and dirty looks for disturbing their repose. These grooming gloves get the ride going with good feelings, enjoyment, and relaxation rather than the "oh its you again, drat it, you are so clumsy etc., etc., etc…)

Feel free to PM me at any time. I have over 300 blogs on Barnmice (http://www.barnmice.com) under my name, Jackie Cochran. Most of them are about me riding the various horses my riding teachers have brought out for me over the years, my problems during walking and trotting the horses around the riding ring, and the solutions I have found for my problems and the problems that the horses have, problems that come from years of bad riding before I climb up on them. Nowadays I ride “throw-away” horses, horses my riding teacher “inherits” when their owners stop paying board and disappear. They all have problems, and I try to fix the problems, and the ladies I ride for say that after I ride these horses they go better for the normal lesson riders.

Take care, and keep on riding!!!

[Pocket_Pony]

I’m sorry you had that issue with jerky trainer man. Aside from lack of social graces, some people just don’t get it. Actually, I’d say most people who’ve never had a chronic issue just don’t get it.

I’ve had chronic pain for a while now. Just looking at me and/or seeing me walk around or ride or do chores or whatever I do to be active, probably no one would guess what is going on. I’ve learned how to manage my pain well enough to do most of what I want, but I do have to make accommodations.

I remember one time trying a personal trainer and I told him “I try hard at everything I do, and I will push myself too far to do something well, so if I tell you I can’t do something, you must believe me.” And he’d try to tell me to do things I told him I couldn’t do and next time he’d tell me again and I’d tell him I couldn’t and so on. That relationship didn’t last long. Same thing with a Pilates instructor I tried who insisted that my body must be able to get into a certain position. Um, no. Not happening.

Just do you. Ignore the idiots. You can and you will find a horse who is sensitive who isn’t a push ride, who can carry you along and allow you to ride in the refinement that works for you. Gah. Some people!

[spaceagevalkyrie]

Hey OP what are you looking for in a horse? Not to be a total weirdo but I have a fairly green (but very, very kind) gelding who pretty much NEEDS his own person to look out for. I’ve been trying to find the perfect person for him since I’m moving and can’t take him with…

[ThreeHorseNight]

OP, that trainer was an ass. Don’t waste your time, energy, or breath on people like that. I have a feeling he’s an ass about a lot of things to a lot of people.

[doublesstable]

@alter-real

First of all, I do want to vent. If you want to skip the rant, you can move down to the last paragraph.

I really wish that trainers, who often have a great deal of strength and physical stamina in spite of injuries and difficult times, had more empathy for people with serious illness. Managing a chronic illness is not the same as pushing through an injury or temporary lack of fitness (I have done both). I have MS as well as a number of other significant health issues. While I try my best to not let it affect the way I live my life it inevitably does and although it’s relapsing-remitting it gets just a little worse every relapse to the point that I now can no longer drive, for example. My world has certainly become a lot smaller over the years and I try very hard to not be embarrassed about it or let it limit me any more than absolutely necessary. At this point I’m no longer able to ride the more challenging types of horses that I used to enjoy. I wish to continue riding at the upper levels, but will need a special horse. I’m now horse shopping and I try to make it as clear as possible to sellers what I’m looking for in a horse, without overburdening them with personal details. I have one leg that has very little strength in it and can have vertigo, slow reaction time, etc. - however, I don’t look bad when riding and can usually bring out a lot in a horse even when I might feel somewhat disoriented in the saddle on a bad day. I’m working with a wonderful trainer who agrees with me about what I need in order to reach my goals, so I am not being unrealistic in my expectations. We work on the principle of “maximum from the horse, minimum from the rider” and my focus over the past year has been refining the use of the aids so that I can continue to ride at a high level despite being physically infirm.

A trainer (BNT) who I rode with a few times in clinics had a horse for sale a few hours away so I went out there to see him today. The horse was very nice and suitable in many respects, but more of a “push” ride and 10 minutes into riding him I was very tired & not really enjoying the ride. Not all rides will be amazing, no matter how great the horse, but when I try out a new horse I need there to be some “spark”. It took some courage to ride a new horse in front of others, since I’m acutely aware of my deficits and also a bit rusty (haven’t had a horse to ride in a few months). I generally don’t like to discuss health issues (anonymously online is a bit safer ) but have decided to approach it very matter-of-factly and explain what I need in a horse. Most people are gracious about it, and this trainer has been in the past when I lessoned with him on my own horse. However today when I came to a halt, thanked him for his time, praised the horse’s qualities but explained he was a colder ride than I like and took more physical encouragement than I had in me, the trainer told me that if I expected to find a horse that didn’t take a physically strong rider I’d never find one. Well, I have ridden quite a few of them and just retired one that I rode for 10 years who is light as a feather, so I beg to differ. But I didn’t say any of that, just told him that if that were the case I sadly did not have any way around the matter because of my own limitations. It is not as if I am happy about this, after all, but I made a joke poking fun at myself to lighten things up. I told him I’d get a little more fit muscularly (sitting the trot better, etc) once I get back to riding more often but wouldn’t likely become particularly strong and would probably get worse over the years. He then told me I should go running every day. This is where it started to get pretty uncomfortable. I told him that was contraindicated for my condition but I appreciated the suggestion. He told me, “no it will help your…sickness, whichever one it is I can’t remember, if you exercise more. Sitting around won’t help.” I told him that I was following my doctors’ advice and that gentle exercise, as opposed to exertion or being sedentary is the best for me. That was why I was continuing to ride, after all, to keep myself moving. If doctors ever tell me I need to increase my activity levels I will consider it. He then ridiculed the fact that I was listening to the doctors and said that if I just listened to them I’d just sit on the couch all day eating chocolate. I have NO idea where that came from. In fact, now that I type it out it’s more laughable than insulting. At the time, though, I was shocked. I just couldn’t believe that someone who admittedly did not even know what my health problems were, had just told me I should ignore my doctor. I wasn’t even asking for advice, I was merely trying out a horse, and was already in the uncomfortable position of having to share my own weaknesses/health issues because it was relevant to the situation - it certainly was not open to discussion. Anyway, my eyes widened a bit at that but I managed to change the subject and got myself out of there as soon as I could. It was mortifying, though, to be talked to like that since I already feel so sensitive about all this.

I already plan to distance myself from this trainer but I’m also inclined to stay more tight-lipped about health issues. Bear in mind that I’m a very private person - very few of my coworkers and fellow boarders know about my health problems; I only tell those who I feel “need to know” but am admittedly not always good at figuring that out right away. With sale horses in the future I can just tell people what I’m looking for and if I don’t feel it’s a fit I will just move on without excess explanation. When I go to a clinic, though, I’m still uncertain on how to find a balance between not explaining enough and leaving people in the dark when the information could actually be helpful, and over-sharing and allowing boundaries to be crossed. This is not the first time I’ve encountered problems with trainers not respecting my disability, yet on other occasions I’ve had trainers actively encourage me to tell them if something wasn’t working. How do others handle this?

I too have illness others do not see. I don’t say too much about it because like others have said here in your thread; people don’t get it unless they experience the illness themselves.

I now have a new one added to the mix of Lupus and Fibro; Venous insufficiency… where when I ride a cold horse that requires a lot of calf I get cramps. It has started to cause issues in lessons. I have been riding since I was 7 and am 52… NEVER have I had to stop during a lesson; and I had to last week. When my muscle heats up it cramps. UGH.

Saying that - one of my horses is forward and sooooo amazing to ride!!! My other can be a bit cold. So those horses ARE out there. The one I LOVE riding is part Anglo Arabian. He is a registered Westphalian but that bit of blood makes him SO ride-able.

When you are shopping they don’t need to hear about your health issues - it’s none of their business - just simply say you get along with a more automatically forward horse. Who wants to work that hard anyway. At my age I don’t like the leg kicker horses… and I know I have a reason not to. It’s your money you can buy what you want… and YES you can find a more forward thinking horse that is safe!!!

That trainer that said those things to you doesn’t understand and wont… If you go to a clinic you will go on your new horse that is a pleasure to ride…

I did briefly tell the trainer I regularly ride with I have some medical issues… they should know in case something does happen. I take Advil before some of my lessons if I wake up feeling like I was hit by a truck and hope for the best…

[littlebaymuzzles]

I’ve always been pretty open about my medical issues- not because I love to talk about it but because more than once, I’ve happened upon people who have been dealing with similar things, either diagnosed or still working on it, who needed to talk through their stuff with someone who would understand and hadn’t found anyone to do that with yet.

That said, some days it’s hard to hide anyway. During bad periods I fall a lot (last year I sprained the same ankle twice very badly and back to back- once I get tripped up I have ZERO recovery skills) and I once got stuck on a horse when my hip locked up and I couldn’t move to get off. My trainer had to help me basically fall gently off the side, so awesome trainers who understand body issues are definitely out there! Hang in there and keep looking. Once you’ve got the right people in your corner, finding the right horses will be much easier.

[CHT]

I am sorry you had such an uncompassionate experience.

I am fairly open with my clients about my health condition for two reasons: 1) It affects what services I can provide, and how much I can do in a day, and 2) It makes them more comfortable discussing their own health issues.

I do mention it to clinicians/coaches (in simplistic terms), but it is hit or miss if they get it. It is tiresome and frustrating at times. I find older coaches seem to have more understanding/empathy. Younger ones who just think it is the same as being a little tired/sore are frustrating.

I have found it easier to NOT say what I have (it’s pretty rare anyway) but rather to just mention the symptoms that will affect my functioning for the lesson.

[someofusarebrave]

You don’t have to say everything, but I’d recommend finding someone at the stable you feel safe sharing your illness with. It’s nice for the comfort, and just in case something flares up you’ll have someone nearby to help you with. Also, though, you should feel like your trainer is a safe and approachable person. This tendency for people with horse background to become trainers even if they don’t like people or know anything about business is terrible. Find a trainer who can be compassionate and empathetic and kind as well as improve your riding. Otherwise I bet you won’t feel comfortable riding with them or receiving their instruction-nor should you.