10 Things You Should Say to Someone with Endometriosis

Yesterday I listed 10 things you should not say to someone who has endo (yet we still seem to hear all the time!).  Being the helpful soul I am and determined to be more positive, I would like to provide a list of suggestions of what you could say instead.  This time I’ve divided it up into categories of friends, employers and medical staff.

FRIENDS

1) Can you eat here?

Not everyone with endo will have digestive problems, but a good number of us do and there can be massive limitations on the foods we can eat.  If you want to meet up for dinner, just flick us a quick text to check if we will be able to eat there.  If it is a restaurant that prides itself on incredibly spicy foods, or is heavily based on red meat and dairy, or tends to load its dishes with onion and garlic, all of which can be trigger foods, we might have to take some precautions such as calling ahead to explain our dietary requirements.

Similarly…

2) Is this something you can do?

I’m not saying you have to plan every outing around your endo-friendos, but if you want them there you may have to tweak some plans.  Someone who is relying heavily on serious pain meds, for example, should probably not be inviting to go-karting.  Some people are fine with sitting down and will love going to the movies with you; others might ask if you could rent a film and watch it at someone’s house instead because sitting hurts.

Also, please understand that your endo buddy may have to pull out at the last moment.  It’s annoying and unpredictable, this disease, and best laid plans will often go astray as a result.

3) I’m really sorry you couldn’t make it.  Can we catch up soon?

It’s just nice to feel remembered and included even when we can’t be.  🙂

4) How can I help?

You don’t need to feel an obligation to help, and we will often say that we’re ok, but it is so nice to be asked.  Of course, sometimes we will take you up on that offer.  Please also ask us back if you need our help!  We may not be able to do something super physical for you unless we’re having a really good day, but we rely so much on others that it is always lovely when we can do something to pay it back.

EMPLOYERS

5) Do you need us to make an adjustment to your work hours or duties?

Not every workplace will be able to provide that kind of leeway, and we totally get that.  However, if your employee is struggling with endo and you are able to offer them reduced hours or duties, even temporarily, it can be such a big help.  For instance, a few weeks back I was suffering really bad pain and nausea in the mornings, which made it impossible for me to get to work on time, so my boss very kindly let me start work at 10:30 for two weeks and not make the walk over to court.  It meant that I could actually get to work most days and at least achieve something.

6) This isn’t something we can do long-term.  We need you to look into other employment options.

It’s awful for us to hear that you can’t keep us employed because of our illness and it will cause us to feel a lot of pressure and guilt.  However, if you are no able to keep us employed because we can’t meet the standards of employment and reasonable adjustments can’t assist us, please, tell us.  If we have sufficient notice it lets us plan a graceful exit and get our lives as much in order as possible.  That’s far better than sudden, terrifying unemployment, possibly on bad terms with our employers.

7) We need X, Y or Z from you.

If you need any kind of supporting evidence or documentation, please tell us.  If we are constantly sick and you are prepared to accept a single note explaining our condition and the likelihood of continued absences as a blanket sick note rather than new ones for each block of illness, please let us know, because that helps us too.  We want to stay employed.  We like earning a living wage.  We may need accommodation from you, and we will do whatever we can, within reason and law, to make that easier on you are our employers.

MEDICAL STAFF

8) What have you already tried?

You can bet your bottoms we’ve tried at least something.  Rather than insisting we take another panadol, letting us explain that we are already on endone helps skip the unnecessary, “try this and lie down for a few hours” and explore new options straight away.  Plenty of times in the emergency department and in GPs the conversation has started out with, “I’ll just get you some panadol first,” and it’s an odd place to start.

9) Are you interested in having children?

Please ask this and then either pursue or drop it as appropriate.  I am lucky that most of the specialists I have seen have not pursued the question multiple times or pushed it as a solution.  Establishing early whether it is an option the patient is interested in or something you may need to accommodate in your treatment plan will really help us feel trust in you without feeling pressured or guilted into pregnancy.  Specialists who do this, we love you.

10) How is the pain affecting you?

A lot of doctors will ask how bad the pain is or where it is, but don’t tend to ask what kind of impact it is having on our lives.  That leaves many of us feeling like we aren’t being heard or like we haven’t properly explained our pain.  Saying that our pain is a 7 most days is one thing, and I assume it is useful diagnostically.  However, if I say that my pain is a 7 does that explain that it prevents me from walking, or that I can’t eat because I need to throw up every time I do?  Many patients are in too much pain to be rational and coherent, or face systemic issues such as language barriers, distrust of authority, or fear of hospitals, all of which prevent them from giving a proper explanation.  Asking this question is helpful and incredibly validating.  I don’t want to tell any medical professionals how to do their jobs, and I know ED doctors are short on time, but please remember that for patients the process can be scary, confusing and difficult, and things like this can make a big difference.

 

Endo people, what are questions you wish people would ask you?  Friends, bosses, doctors, nurses, what do you wish you could ask, or want to tell people with endo?  Let me know in the comments.

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