Moving out for the first time

Accommodation top tips

• You can normally get extra stuff added to your room – for example, if an extra grab bar would be helpful – try reaching out to your accommodation or maintenance team for this
• Campus security services are often first aid trained – if they are, having their number saved might be helpful
• You can sometimes move in a day or so earlier that most people if that would be helpful
• If you have medication that needs to be stored in a fridge, you can get permission to have a mini fridge in your room – occasionally the university will also provide the fridge for you
• You can also get permission to bring an orthopaedic mattress instead of the standard university provided ones – another option is to keep the standard one but get an orthopaedic mattress topper (they’re usually less good but still have an impact and are cheaper and easier to transport)

 Accommodation

If you are moving away from home for university, you’ll likely be moving into student halls. If you’re not moving away but struggle with fatigue, it might be worth checking if you can still get access to a room in halls to rest between sessions. There are normally lots of options and different types of rooms at university. Most universities offer both catered and self-catered accommodation and it is worth taking time to consider which might work best for you – for example, catered might be helpful for managing fatigue but self-catered might work better for dietary restrictions and flexibility around when and what you eat. If you need an ensuite for medical reasons, universities will often only charge you the shared-bathroom equivalent rent if there is one. You may also want to consider a studio (where you have a room and private kitchen area in one) – these may be useful for food allergies or conserving energy but using a shared kitchen can provide an easy way to socialise without having to leave where you live. DSA (could link to Laura’s page here) may be able to provide you with specialist desk and desk chair equipment but the rest will be up to the university. You normally need medical evidence in order to get a certain room type for health reasons or an accessible room but you can usually start the process whilst you’re still gathering this. It can be very useful to visit the room you’ve been allocated to before you move in so that you can identify and point out any potential issues or improvements and get things sorted before you move in.

Accessible Rooms

Accessible rooms normally have grab rails, pull cords, wet room style showers with chairs and extra space. Other adaptations may include fire escape doors in the room, lowered wardrobe rails, moved shelves and boards so that they are all within reach and automatic doors. Accessible kitchens normally include roll under sinks, hobs and sides and lower fridge/freezers and may also have automatic doors. If you need an accessible room, it is also worth checking that other areas you need to access have things in the right place for you too – for example, are there both washing machines and dryers on a lower level in the laundry or are all the dryers on top of washing machines?

Hi, I wanted to give you some tips on some things you could offer to do if you wish to support a flatmate or housemate with Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder a little more.

One thing would be offering to refill and reheat hot water bottles or heating packs if they let you know they are having a high pain day and you can see or they express it’s a struggle to keep moving to do it.

A small thoughtful gesture such as bringing them their favourite snack or some water when they are having a bad day when maybe they are in bed for most of it. This could show them that you care and want to be there for them.

If you are popping out for a walk or to the shops and they don’t feel up to coming as they are flaring, and maybe they are struggling to keep up with a busy timetable, you could offer to pick something up from the shop/pharmacy for them.

A flare is a time when symptoms go beyond the persons everyday baseline.

If you are a close friend who is also living with them or feel you have known them long enough, offer to keep them company on a bad day with a film or offer to do one of their low energy activities with them or just sit and chat. If they feel these are all too much but would love to spend time with you or you still wish to spend some time with them offer to give them some silent company. Silent company can mean a lot on really tough days it simply says I’m here. However, sometimes they may wish to just be on their own.

Hopefully this gives you some ideas of how to be there for your flatmate or housemate with EDS or HSD.

Top Tips for sharing space with someone who has a health condition

We understand that people can sometimes become curious when they see something they aren’t always used to being around. So we have complied some do’s and don’ts:

• If they have a stool in a shared bathroom or kitchen please DO leave this available for them to use at all times.
• DON’T move any medical equipment or mobility aids around.
• DON’T use any of their adapted kitchen/bathroom items as they may not be able to just use another thing eg. standard fork as simply as you!
• Remember these items are essential for their ability to carry out daily life and can be expensive to replace.

Things people with EDS/HSD living in a house/flatshare may want you to know

• They might not always be able to join in on everything or may need to leave early, for some people this even applies to things in the house/flat. Don’t stop inviting them because of this, they are doing what they need to in order to manage their symptoms. It might not make sense or appear to you like they are struggling, this is because EDS/HSD can often be what’s called an invisible illness.
  • Believe and respect them when they tell you they need to leave early, can’t join or say no. It isn’t personal, I’m sure they would love to be there!
  • Sometimes the person you live with may be able to offer an alternative option to a plan so they can join even just for some of it!
• They might not be able to join in on everything but don’t let that distract you from the person they are and what they may be able to bring to your life.
• Just because they can do something one day it doesn’t always mean they can do it the next.
• Remember they aren’t choosing this and they aren’t lazy.
• There is more to them than their EDS/HSD. Get to know the person too, they aren’t just someone with EDS/HSD!
• Many with Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder often find symptoms fluctuate.
• These types of conditions can be unpredictable.
• Be a friend.
• Treat and look at them the same as everyone else!

There’s lots of great information on friendship on this website so please do check it out!

Advice for people who feel they want to support/help someone with EDS/HSD that they share a flat/house with a little more

We understand sometimes you just want to support but are unsure how. Sometimes you just really care about your friend it’s hard to see how much their everyday life is affected. When you live with someone you may see this more than those who don’t. It would be understandable if you were to find that tough. Some may often feel helpless and unsure of the right thing to do.

Some people can find it hard seeing people in their life high levels of pain but want to help. If this sounds like you then you may find this information useful!

Firstly, I’m sure the person you live with will understand if you talk to them about finding it tough to be there when they are in really bad pain and I’m sure will be happy to have your support at other times.

Key Points:

• Learning about Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder can be a helpful. This website is full of lots of information.
• Talk to the person about it, let them know you want to support them and ask if there is any ways you can do that.
• Small gestures go a long way, such as offering to fill up a hot water bottle.
• Reassure them if they need anything to ask.
• Believe and respect them when they tell you they need to leave early, can’t join or say no as they aren’t well enough. It isn’t personal, they are doing what they need to do to manage their symptoms. I’m sure they would love to be there if they could!
• Keep inviting them to house/flat activities even if you think they’ll say no. You could even ask if there is a way they could be included with an adaptation sometimes this may help, other times it wouldn’t make a difference.
• Just because they can do something one day it doesn’t necessarily mean they can do it the next. Many with Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder often find symptoms fluctuate. These types of conditions can be unpredictable.
• They might not be able to join in on everything but don’t let that distract you from the person they are and what they may be able to bring to your life.

If you worry about what to do to help when they are in lots of pain have a conversation with the person. Some suggestions of things to ask include:

• Ask your flat/housemate what they know helps them in those times and what you can do to help.
• Ask what they need when they are in that way. Open a conversation about different places they lean on for support and when to contact them can be really helpful for future planning and being able to feel prepared in those moments if you wish to help.
• Ask if they have anything written down of things that help them that you could read over or grab them in those times.
• This can be really helpful especially if the person is new to the diagnosis as they may not always remember what helps them in those moments, and even if they have been diagnosed a while some can find it easy to forget when they are like that; you can be the one to remind them!

Here’s some ways you may be able to offer the person you live with EDS/HSD some support if the person feels they would like/need it.

• When making offers if the person you live with says they don’t need/want the help then please do respect this unless you feel they are putting themselves in danger. If you think they are going to be in danger then act accordingly.
• If you feel they are saying no to be polite gently remind them from time to time things such as ‘if you ever need any help no matter how small even if it’s reheating something for you just let me know’ or ‘I am happy and here to help if you need it’.
• Sometimes they may say no to something one time but say yes to the same thing on a different day.
• Unless they tell you something isn’t going to be helpful to them ever then do offer it again if you would like to, even if they decline it the first time.
• If they are always saying no to the same thing then you can always ask for some clarity over if they wouldn’t find the thing you’re offering helpful so you know to not offer it again but let them know if they ever feel it’s helpful when you’re living together then they can ask if you’re willing to do it still.

A video with suggestions of helpful things you could offer to do:

Want this as a video if someone is willing to record it for me, if not just let me know and I will put it in written form. I will send script in a separate document incase that is helpful.

END OF VIDEO BACK TO NORMAL TEXT.

Some things you could do/know that the person with EDS/HSD may appreciate:

• Learn about EDS/HSD, this website is a great resource for that! Also learn about any other conditions if the person you live with has them. Remember it is there choice what information they disclose to you. Some may just say how something affects them others may give the names. If you are wanting to educate yourself don’t be afraid to ask for what it’s called or for information/places to learn and explain why you want to know.
• Understanding that the person living with EDS/HSD knows their body best best.
• Asking them about how you can best support them if this is something you feel you want to do and being willing to listen, learn and adapt.
• Reassure them if they need anything to ask.
• They might not always be able to join in on everything or may need to leave early, for some people this even applies to things in the house/flat. Don’t stop inviting them because of this, they are doing what they need to in order to manage their symptoms. It might not make sense or appear to you like they are struggling, this is because EDS/HSD can often be what’s called an invisible illness.
  • Believe and respect them when they tell you they need to leave early, can’t join or say no. It isn’t personal, I’m sure they would love to be there!
  • If you can and they need support with getting home help make leaving early a possibility for them.
  • Sometimes the person you live with may be able to offer an alternative option to a plan so they can join in!
• Just because they can do something one day it doesn’t always mean they can do it the next.
• Remember they aren’t choosing this and they aren’t lazy.
• There is more to them than their EDS/HSD. Get to know the person too, they aren’t just someone with EDS/HSD!
• Be a friend.
• Treat and look at them the same as everyone else!
• They might not be able to join in on everything but don’t let that distract you from the person they are and what they may be able to bring to your life.
• These types of conditions often fluctuate and symptoms can sometimes be unpredictable.