The Mighty Logo

10 'Strange Requests' That Would Help People Manage Their EDS Symptoms

The most helpful emails in health
Browse our free newsletters

Living with Ehlers-Danlos syndrome is a challenge. There are certain things someone with EDS would love to say out loud but may not always feel comfortable or confident enough asking for. If these could be said, would they make your day easier?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. Please don’t wear strong perfumes or aftershaves. Sensitivity to smell is common among the EDS population. Being exposed to strong perfumes can lead to migraines, headaches and nausea.

2. Can you turn down the lights? Bright lights or lights that flicker can trigger headaches and migraines. Some people with EDS are very sensitive to strong lights and prefer a softer lighting approach. Ironically, the strip lighting in hospital corridors is always one of the worst offenders.

3. Please offer me a seat on public transport. Fatigue and the general stress of traveling on crowded transport can make it challenging with EDS. Often people with EDS don’t look “ill enough” so they are not typically offered a seat. If only invisible illness could be seen sometimes.

4. Could I sit on the supermarket floor while I queue up to pay? It can be a challenge having to queue anywhere. The long wait with nothing to lean on can be enough to set off some backache or fatigue. Sometimes living with EDS means that queues are abandoned and we return when it is quieter. Planning shopping trips and activities ahead can help manage symptoms.

5. Can we turn the heat down? Heat sensitivity can be a major problem. Excess heat can bring on nausea, fainting and tachycardia.

6. Can we turn the heat up? It works the other way too unfortunately. A cold room can bring on cold headaches, painful joints and freezing fingers and toes.

7. Please don’t ask me to get up too early. Getting out of bed after resting for many hours can bring on POTS, dizziness, sickness and a general feeling of being unwell. Being put out of what is considered “normal” for the body clock seems to confuse the body systems easier in those with EDS and generally disrupt the body.

8. Can we be home by 10 p.m.? If the body is used to a set routine, disruption to that can cause repercussions. Fatigue and tiredness can set in. This can make brain fog, coordination and concentration worse. Headaches from lack of sleep can also be triggered. Poor sleep hygiene can be a feature of EDS. Sleep can be difficult due to pain, insomnia, medications, anxiety. It’s important to try and get as much rest time as possible. Regular late nights can take their toll.

9. Please don’t offer me homemade cakes with food colorings or additives. Sometimes, strict diets need to be followed, especially if food sensitivities are known. Certain foods and drinks are more likely to trigger reactions; food colorings and E numbers can cause migraine attacks for some. Everyone will have a different reactions to different foods and it’s hard to say no when someone offers you a homemade bake.

10. Please don’t be annoyed if I cancel our plans at the last minute. Living with EDS can be frustrating and debilitating. Many of us like to carry on with “normal” activities when we can but sometimes EDS wins. The body just has to rest. There are good days and bad days. High energy days and low energy days. Late canceling might be seen as rude or inconsiderate but it really is a necessity sometimes.

These may appear strange requests – people may even consider these the signs of a difficult person. But in reality, these are daily issues living with a chronic illness like EDS can bring. The people who really care about you and your health will not be judging your requests. They will understand.

Photo by Joanna Nix on Unsplash

Originally published: October 30, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home