It took me a long time to come to terms with the fact that my chronic migraines were running my life. I kept trying to manage them, minimize them, explain them off. Even at their worst, when I was missing work more often than attending, curling up under the blankets in my room with the blinds drawn, I had a hard time accepting that they were severely limiting my ability to live my life. Migraine is one of many invisible disabilities (meaning that others can’t tell you have a disability just by looking at you, unlike blindness or being in a wheelchair), but just because it’s invisible doesn’t mean it’s any less debilitating.
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Even though episodes are at a minimum now thanks to preventative medications, they have been replaced by chronic headaches. I’ve heard opinions (often unsolicited ones) in both camps:
“At least they’re not migraines anymore! You should be grateful!”
“Daily headaches is not a solution! Go back to your doctor!”
The truth is that migraine has a way of running (and ruining) your life, even when you’re not currently experiencing episodes.
Even though (up until 2 weeks ago) I hadn’t had a migraine in months, for example, I worried (and still worry) about telling the doctor about my headaches.
What if she wants to change my medications?
And if the migraine episodes come back?
What if it’s worse than before?
And this constant pain, worry, and fear led me to finally adopt Dobby and begin her training as my medical alert dog. I had been considering the possibility of a migraine alert dog for a few years and finally took the plunge thanks to my partner’s encouragement to pursue it.
Last month in Miami for Mother’s Day and my brother’s wedding was my first time traveling with her and taking her everywhere as my service dog. And since my return, I’ve been following that same pattern back home in Los Angeles. And let me tell you, I have learned quite a few things about having a service dog for invisible disabilities!
Table of Contents
Lesson 1. People will be nosy – have your responses to common questions ready.
Some people lack common sense and a concept of personal boundaries. For some, it’s not enough to know that a dog is your service dog. They may want to know what the dog is trained to do. They may even ask what your disability is!
Have answers to common questions ready, and stick to your guns. Replying with a short, “that is personal information” will politely but clearly let a person know they are asking inappropriate questions and should back off.
You can even have funny business cards printed (like this kid did) to hand out that will save you the trouble of answering the person’s questions!
If a playful business card isn’t your style, perhaps an informative infographic printout? I found this incredible one by Orvis.com you could hand out to nosy people 🙂
Lesson 2. People will give their unsolicited opinions – choose your battles.
Maybe it’s a Miami thing (hint: it probably isn’t) but sometimes people really just love to give out their unsolicited opinions! I took Dobby into Walmart, where I carried her in my arms. She enjoyed the trip, cuddling me and watching the passersby. An older lady came up to see her and then informed me that “your dog is so scared”. I just placated her and walked away, choosing to focus on my pup and family errands.
I know Dobby. And I can tell when she is nervous or scared: she shivers and drools puddles when she’s uncomfortable.
Instead of arguing with a woman who doesn’t know me, my dog, or our relationship, I chose to just move on. I imagine that life with a service dog (especially one for invisible disabilities) will bring with it many struggles where uninformed people are concerned. Choosing to pick my battles early on will save me many fights and headaches (metaphorically and literally) along the way.
Lesson 3. Many people won’t understand your need for a service dog – inform them the best you can but it’s not your job to educate the world.
If it comes naturally to you, feel free to share your story. Talk about your disability, your experiences, your needs, your service dog.
However, (and this is a key point) it’s not the job of the person with a disability to educate the general population. Even though her article is primarily discussing race, Olivia Zayas Ryan says it best in her article RYAN: Marginalized groups are not here to educate you.
“…marginalized groups are not under any obligation to educate you. They are also not obligated to hold your hand through your learning process.
We must stop demanding emotional and mental labor from those of us who are already dedicating our time and energy to simply survive. If you care about an issue and want to be a better ally, go and educate yourself on the issue or community you support.”
-Olivia Zayas Ryan
When people expect to gain all their knowledge on the topic from the marginalized person, it frees them of the task of educating themselves on their own time. Even worse, it places the burden of their education on the person already having to cope with social injustice.
If you do not wish to be placed in the role of educator, have some responses planned beforehand so they don’t catch you unawares. If someone is attempting to use you to educate themselves, perhaps you can respond by suggesting they read up on:
- ways that people with invisible disabilities are persecuted by those in the community
- the fact that many don’t even consider some invisible disabilities like migraine and fibromyalgia to be “real”
- ways that the workforce discriminates against people with invisible disabilities
- how people with invisible disabilities suffer financially
Lesson 4. I bought her a Service Dog vest, even though it’s not required legally.
Here in the US, there is no requirement for service dogs to be visibly identifiable. At first, I didn’t plan to get her a vest. I wanted to keep my privacy and keep her comfortable. However, since one of the few things people do know about service dogs is that they shouldn’t be pet or spoken to while on duty, I’ve come to learn that I value my sanity more than my privacy.
The fewer people come over to interact with her, the fewer opportunities they will have to say something offensive or ask an intrusive question. This will result in fewer battles (or reruns of the conversation in my head for hours on end, picking apart what I should and should not have said) and therefore fewer headaches (yes… pun intended).
If you recently got a service dog and are looking to buy them a vest, you can find some great ones here.
Lesson 5. Sometimes, even people you think you can trust with your personal information will be downright nasty!
I know, I know, not everyone is raised to have good manners!
There’s a huge stretch between being someone being uneducated and being a downright nasty person.
Someone that is uneducated but willing and eager to learn presents a great opportunity for you to spread awareness (if you wish to do so). On the other hand, someone nasty may make you doubt your disability, your needs, and yourself as a person.
I had an experience like this one this month, and for better or worse, it taught me that:
- people are generally going to be less receptive to you than you expect
- few people that push for an explanation actually deserve one (unless you are legally obligated to inform them, such as with a landlord, education establishment, or employer)
I took Dobby to lots of the homes I consult at this month, but one incident really stuck out at me at a particular home. Now, keep in mind that in my day job I work with people with special needs. One would think that the staff in the homes would have some knowledge of discussing sensitive topics with class and gentleness.
One of the staff members (who does not have any authority in the home to ask intrusive questions) saw me walk in with Dobby in her dog carrier, and this is pretty much how the conversation went.
“What’s in there?””
“In this bag? Oh! That’s my service dog in training.”
“Wait, your service dog?”
Oh boy… I could already hear the disbelief dripping from every word. That’s the downside to the “invisible” in “invisible disabilities.”
“What does she do?”
“She will be a medical alert dog.”
Due to her position in the home, she shouldn’t have asked any questions. But since she did, this is clearly as far as she should have taken it.
“Oh really? What diagnosis do you even have? Let me guess… anxiety??”
Now, obviously this wasn’t going in a direction I appreciated. At this point I should have ended the conversation or redirected her to another topic.
What if I did have anxiety? It’s certainly none of her business to know my medical history.
But my concern with her comment goes far beyond my medical privacy. After all, I am aware that you give up some of that privacy the moment you get a service dog, since your invisible disabilities are no longer quite as invisible.
I didn’t appreciate the direction she was taking the conversation because of her tone. It strongly suggested that not only does she look down upon a diagnosis such as anxiety, but she also doesn’t believe it worthy of an assistance animal.
There are, in fact, emotional support dogs out there for people with anxiety, depression, PTSD, and other psychological needs.
Once I have more experience with Dobby, I’m sure I’ll be prepared for people like this. But today, I have to admit, she caught me completely unaware, and so unfortunately, our story continues.
“No, not anxiety. She’s actually a migraine alert dog.”
“Migraine? So what… she can tell you’re going to have a migraine? Before you?”
“Yes, by smelling changing levels of body chemistry.”
“It’s kind of crazy how all of a sudden everyone has a service animal. It’s crazy how people take advantage, some people even have huge dogs! Airlines are going to have to start getting more strict with this whole ‘service dog’ thing. I’d be so pissed if I was in an airplane sitting next to someone with a big service dog…”
From there, her monologue continued down a spiral of increasingly offensive and uninformed statements. In case you’re considering getting a service dog, or have obtained one recently but don’t know much about the legalities, here’s some stuff I’ve learned along the way to help you understand your rights.
- Yes, perhaps people take advantage, but it’s better to wrongly believe someone when they pass their dog off as a service animal, than disbelieve someone with a disability that truly needs the assistance.
- There are no limitations to what breed your service dog is. In fact, depending on what your disability is, you may actually need your service dog to be of a larger breed to complete his task of keeping you safe and healthy effectively.
- There are several laws that protect the rights of service dogs and emotional support dogs (and their handlers, of course). Therefore, there is a very limited extent to which airlines can get “more strict” unless the laws surrounding service dogs and emotional support animals change and include stricter policies.
- If someone is pissed off about sitting next to you and your service dog, it says a lot about them. Actually, it says more about them than it does about you. Namely, that they believe their comfort through the flight takes precedence over your safety and medical needs. Them having a comfortable flight should never be more important than another person’s medical needs!
What a crappy feeling.
I felt scrutinized and judged even though I had done nothing wrong.
In fact, it’s a HUGE positive to seek out assistance in any way you can. Research has shown a link between migraine and depression, meaning a migraineur may not always actively seek out help.
But she made me feel like I am lying or exaggerating about my condition.
Like I am cheating the system by getting a service dog I don’t actually need.
And let me tell you something: it was one of the crappiest feelings I’ve ever had.
Nobody with a disability should ever have to feel this way, and the social justice warrior in me regrets not taking the opportunity to inform an uneducated member of the community.
Needless to say, I’ve taken some serious mental notes today for the next time I have to engage with someone that doesn’t recognize the extent of their offensiveness.
Life with a service dog can bring so much happiness and hope to the life of someone with visible or invisible disabilities. Unfortunately, when those around you are uninformed, things can get a little messy, even hurtful or offensive. I hope my experiences can save you some headaches along your journey, since we are all fighting battles others know nothing about.
StephanieCristi’s Top Recommended Migraine Products
StephanieCristi’s Top Recommended Puppy Products
- on-the-go collapsible food and water bowls
- heavy-duty carrier
- ID tag
- service dog vest
- retractable leash
- peepee pads for indoor accidents
With all my love,