HSD (Hypermobility spectrum disorder) can be difficult to manage. We have to handle frequent injuries, chronic pain, fatigue, and poor proprioception.
These symptoms are hard to mix with everyday life, and we struggle in silence since it’s hard to requests the things we need to feel better without being judged.
Even today, people tend to oversee the difficulties that arise from having HSD - we need to start speaking up about our struggles and asking for the things that would let us live peacefully and overall feeling a lot better.
Let’s start with this simple list I have compiled. You can ask this to a friend, a family member, a co-worker, or even just someone in line to buy groceries. Take the courage this month to speak up and ask for what you need - no shame.
Please, don’t use that strong perfume - Please, don’t use that air freshener.
This may be something you can ask for in your household. It would be good for you to explain to your family members that people with HSD tend to be higher functioning in all olfactory domains - which means you can smell a bit more than others.
This makes it easier for us to get overwhelmed by what we sense around us. This information may help those that surround you to understand the importance of an odor-neutral house.
Check out these products to maintain an odor-free house:
Please, be understanding if I need to cancel plans last minute.
This is something that will help you in the friend’s department. Canceling plans last minute is a behavior that not everyone understands, and in general, is not well received. Take into your hands explaining why you sometimes need to cancel.
I recommend having an “elevator speech” to prepare for when you start getting bombarded about attending a gathering. You can say things like, “I know I look good on the outside, but inside, my joints are hurting bad. This comes along with exhaustion, it is a real medical condition, and I need your support.”
You can also use the spoon theory to explain why you can’t attend the social gathering. People tend to understand this metaphor very well!
Sorry, no. I cannot eat that Cheeto or that “very colorful” piece of cake.
While at parties or reunions, people can be pushy for you to eat what they want you to eat or try things they made. It would be helpful for you to understand and explain that one of the conditions associated with HSD is Mast Cell Activation Disorder.
Your skin turns red because you are sensitive to a lot of things - including food dye. You need to be very careful with what you eat, and no, it does not mean you are a “picky eater.”
You are just trying to eat things that will make you feel better after, not worse!
Sometimes, I cannot be reliable to go to sleep or wake up early. It’s not because I’m lazy.
This may be one of the hardest ones since it is hugely misunderstood by the workplace, schools, or even your own family and friends. People with HSD have sleep disturbances, and although the studies are still not clear on why it seems to be related to dysfunction in the autonomic nervous system.
It is also associated with the experience of chronic pain and fatigue, which makes it more challenging to have a restful sleep. This doesn’t mean that you are “lazy.” It just means your sleeping patterns and sleep hygiene are different from others.
Please, turn up the heat / Sorry, I cannot be outside right now with you guys.
Being in cold environments may cause muscle spasms - it is expected that when people feel cold, they tend to get tense, and this seems to be exacerbated by HSD. If you feel cold, ask someone to turn the heat up or remove yourself from the cold situation and find a warmer spot.
If you feel FOMO (fear of missing out), make sure always to have something good to read or do while you wait.
Please, turn down the heat / Sorry, can you please turn up the AC?
No, we are not just “being difficult.” Our condition comes with an autonomic nervous system dysfunction, which makes us intolerant to heat.
While people are having a blast on the summer heat and having the time of their lives on the beach, we are battling inside. Ask your friends and family to understand that you feel differently on the heat than them.
While you enjoy being with them, sometimes, heat environments may be so overwhelming that you must remove yourself from the situation.
Excuse me, can I go first in line? / Sorry, do you have a chair I can sit on while I wait?
At this point, I believe there should be a waiting line for people with chronic pain. Society doesn’t seem to understand that standing in line for hours on end or sitting in the same position for a long time can be hard on us.
In addition, standing for a long time has been a risk factor for developing varicose veins among patients with joint hypermobility. Don’t hesitate to ask someone if you can go first in line because you are feeling pain.
You can also ask for a seat while you wait or take a stroll if you are sitting in a waiting room for a long time.
Excuse me, can I please have that seat?
We’ve all been there. Waiting for a long time for the train/bus to come - probably standing - to then also need to be standing for the entire ride home. As explained before, this can be hard on someone with HSD, so don’t hesitate to ask for help.
Ask someone to give you their seat because you are in pain and have a chronic condition. I am sure someone will find it in your heart to help you. If you don’t feel like asking, you can always wait at the station until an emptier train/bus comes.
Sorry, can you turn down the lights a bit?
Many of us who have HSD have experienced a strong sensitivity to light, often painting a picture of intense, light-related pain. Sometimes, just shining on a patio or looking out a window can be blinding.
If you feel this in your own home or elsewhere, don’t hesitate to ask if you can change the lighting arrangement. It is essential you feel comfortable.
I hope going through these requests gives you the courage to ask for what you need to feel good in your day-to-day life. It is a battle you fight every day, and changing the environment around you is a very clever way to manage your symptoms.
You know what helps you, and there is no shame in asking exactly what you need.