On Being a Caregiver to My Loved Ones with Hypermobile Ehlers Danlos

Robert Simonoff

In this article, I am speaking as a caregiver to my wife who has Hypermobile Ehlers Danlos Syndrome. Please realize, as you read this, people express very different symptoms to very different degrees, when they have Ehlers Danlos. One person may be bed bound, another may be up and about taking occasional hikes. This article comes from my perspective, taking care of my wife. I can be found via Twitter: @SimonoffBob

I met my wife in November of 2013.and we were married in 2014. At that time, she hadn’t been diagnosed with Ehlers Danlos, in fact neither of us had ever heard of it. From the outside, it wasn’t obvious that there was anything major going on. However, she did explain that she has always felt that she had systemic issues and that she’d been chasing a diagnosis and treatment for decades. At that time, she was able to largely control her symptoms or push through them.

As time progressed, it became clear that the symptoms were intensifying. I started, early on, researching her symptoms and kept coming up with something called Ehlers Danlos. The details will be the topic of another article, but suffice it to say that she was finally diagnosed, by a geneticist, with Hypermobile Ehlers Danlos.

The information in this article comes from my own experience as a caregiver for the past 6 years as well as what I’ve learned on various website, from online support groups (both patient as well as caregiver), Twitter, some in-person forums, and most importantly, my wife. To be clear, I am not here to say I am a good caregiver, learn from me. I will not suggest that the advice in this article is easy to implement, complete, applicable outside my family, or professionally backed. It is my experience given my personality, the dynamic in our household, and my wife’s specific circumstances.

I would be remiss if I didn’t refer you to other websites about being an Ehlers Danlos caregiver. I won’t say that everything applies equally well to me, but they serve as good starting points and good places to go back to as refreshers.

  • Ehlers Danlos Society: “Caring for Someone with EDS/HSD”
  • EDS Awareness (Chronic Pain Partners): “A Not-to-do List for Caregivers of those with Ehlers Danlos Syndrome”

Learn All You Can About Ehlers Danlos and its Comorbidities

Sympathy and Understanding

Learning about Ehlers Danlos helped me understand what my wife is going through. Understanding that some things are so different than my experience helps greatly. The adage, “Before you judge a man, walk a mile in his shoes.” is very applicable to living with someone with Ehlers Danlos.

  • I don’t know what its like to live day in and day out with chronic pain
  • I don’t remember a day where I couldn’t sleep due to “painsomnia”
  • I don’t know what it is like to have to worry about whether or not the meal I am about to eat will make me need to lay down, make be double over in pain, or otherwise make me regret eating
  • I don’t know what it is like to not be able to rely on my body … to never know if the plans I made will be ones I can keep
  • I don’t know what it is like to not be able to trust my hips to not dislocate when I am walking, my wrist to not dislocate when opening a jar, etc
  • I don’t know what it is like to be told, at most doctor’s appointments, that my symptoms don’t make sense, so they must be in my head

Watch, Listen and Ask

Any person who has lived with a condition for their entire life will obviously not know what it is like to NOT live with that condition — they may not even know that the condition or symptom isn’t normal. For example, I don’t have 3D vision, instead, I interpret 3D based on lighting, shadows and movement. I never knew I was missing out on 3D and I have no idea what it is like to have 3D vision. I only know because a doctor told me based on some testing he’d done.

Someone who suffers with Ehlers Danlos may have learned to accept or cope with symptoms since early childhood. They may not know that a symptom is actually not normal or they may have had the symptom for so long that they don’t even think about it. One of many examples of this is that my wife was in her teens when she learned that there were people that didn’t feel pain the majority of the time.

Watching, listening and asking questions were what allowed me to understand what my wife was going through on a day to day basis. It helped me understand when changes occurred. It helped me pick up on patterns that she hadn’t thought about. For example, I pointed out to her that she seemed to get a cold every single night and her skin would flush. She knew it, but never thought anything of it. It was because I’d read about Mast Cell Activation Syndrome that we were able to come to the realization that this was probably her body reacting to the stress of staying awake past her body’s limit.

Another important reason to watch, listen and ask questions is brain fog. Brain fog is extremely common in Hypermobile Ehlers Danlos. This article, by Dr. Stephanie Estima discusses brain fog in a general sense and some ways that may work to reduce it. Unfortunately, nothing has eliminated brain fog in my wife, this is something we are still working on.

Brain fog, for my wife, means, that when we are at a doctor’s appointment, she may not remember all she wanted to discuss. Watching, listening and asking questions has allowed me to be able to help doctors better help my wife.

Navigating the Medical System and at Doctor’s Appointments

Unfortunately at this point in time, very few are fortunate enough to have a medical team that can see a patient with Ehlers Danlos, determine what problems need addressing, and make good recommendations for addressing them. What works for people who don’t have Ehlers Danlos may not work for those that do, or may need modification to be helpful and not hurtful. A few examples, just to make the point:

  • Physical Therapy may work great, in general. But in Ehlers Danlos and many of the comorbidities, may need modifiations.
  • Many (not all) with Ehlers Danlos have difficulty getting numb when lidocaine is used, knowing this can prevent difficulty at dental procedures, for example.

Learning as much as I could about Ehlers Danlos and its comorbidities helped in other ways as well. Ehlers Danlos can affect every body part and system. It helped me recognize and put names to symptoms. It helps with pattern recognition. I helps me help doctors to help my wife.

Resources

To get an overview of Hypermobile Ehlers Danlos (or hEDS as its been called since 2017), I’d recommend this paper:

Also, The Ehlers Danlos Support UK website has a lot of good information about Ehlers Danlos and its diagnosis.

The same website has good articles and videos about the comorbid conditions and living with them.

Set Realistic Goals

Spoon Theory

Some people subscribe to the “Spoon Theory”, first coined by Christine Miserandino in 2003. You can read about it here in the essay she wrote

According to the spoon theory, you wake up with spoons (units of energy). Each and every action you do costs spoons: showering, getting dressed, making breakfast, eating breakfast, etc. These spoons must be rationed throughout the day to avoid running out before the end of the day. The idea is that with chronic illnesses, there are fewer spoons and each and every action takes more spoons that one would normally expect.

My wife, however, hates the spoon theory, since it oversimplifies reality so much that it still gives the illusion of predictability. It also gives the illusion that a night’s sleep restores the spoons. In reality:

  • Sleep may not restore the spoon count,
  • Even with an apparent good night’s sleep, you never know how many spoons you have when you wake up, it may be 1,
  • What took 2 spoons on one day, may take 5 on another day, you just never know,
  • Spoons disappear for unpredictable reasons — walking in the house and subluxating a joint, which can can happen frequently with some with hypermobility disorders, can rob you of many spoons at a time,
  • My wife (and many with Ehlers Danlos) have gastrointestinal issues, so on any given day, eating a meal that was fine the prior day, could cause symptoms that greatly reduce spoons.

People have tried to come up with different analogies that more accurately represent this uncertainty. This article describes some

For my wife, this all ends up meaning that energy is very finite and expenditure for any given activity is completely unpredictable. That is reality. Fighting against it will only cause frustration and disappointment.

Day to Day Activities

My wife was always a type A personality: make plans, keep busy, get it done, clean and organize, cook meals, and push through. There was a time that may have worked for her, to me its all stories from her past. What I see is: Make plans, back out more than people expect. Keep busy, go to bed to recover. Cook a meal, feel too sick or exhausted to eat it. Push through, be in bed to recover. Keep a spotless house, ummm no, not happening. This wasn’t due to the lack of desire, it was due to the lack of physical ability.

My wife’s abilities changed rapidly over time, but her mindset couldn’t keep pace with what her body was telling her: “Slow down or I WILL slow you down.” Her mind was still that of an over achiever, but her body couldn’t cash the checks her mind was writing. This caused her emotional grief.

I recognized the pattern and pointed it out to her. She has, thankfully, begun to listen to her body and rest when she feels the need. She definitely expresses guilt at this, but hopefully over time this will diminish as well.

Special Events

If we hope or assume that we can do X, Y and Z on the weekend, she may try to suck it up (old habits). If this were to happen, she could be bed-bound for a week or more. It is far better for us to have realistic expectations and COMMUNICATE about everything, before building up expectations. It has long been recognized that expectations can be very damaging, when not realistic:

I have heard of couples that will only buy refundable tickets, for travel, for example, simply because you never know. We’ve bought season tickets to performances at the Kennedy Center, since we really enjoy Operas as well as Broadway Musicals. When we started missing them due to health, it was difficult, primarily on her, since I’d already gotten to the point of having the expectation of, “We will know if we are going when we’ve reached the end of the show.”

Accept Change

As mentioned above, my wife had to accept the change in her body’s stamina and unpredictability. She had to learn to accept the changes in energy she had AND the changes in the amount of energy a given activity takes. She had to accept that she couldn’t do what she used to be able to do AND couldn’t accurately predict if she’d be able to do something she wanted to. She had to accept change.

I have to accept change. I have to learn to become a caregiver, something I am still trying to learn to do. I need to learn to be more efficient with household tasks so I can do them on weekends, in the evenings after work and get more done in less time. I need to learn how to help my wife feel more comfortable with things as they are as opposed to how she thinks they should be.

Change is inevitable in life. For most, life changes happen slowly, so accepting these changes is not a cliff event unless tragedy occurs. However, change in everything health related seems constant and fast with Ehlers Danlos. Accepting change as a way of life has been and will continue to be a process for us.

It’s Still Her Choice

I feel that my role is to point things out to my wife. I point out patterns I see and observations I make. I help her at doctor appointments. I freely point out concerns like you want to do X on Saturday, but you have an appointment on Friday, do you think you’ll have the energy? My job is to help her make the right decision for her, NOT to take away her decision making ability. My job is NOT to speak for her, but to support her in what she’s doing. I believe it would be a grave error to do otherwise.

Utilize Apps and Websites

With Ehlers Danlos things can get complex. My wife has a long medication list and complex medical history. There are many doctors and many things to remember to discuss and ask them. Then there’s the journal articles I’ve read which contain things we need to discuss or a symptom diary she should keep. There is simply too much to remember, so we’ve found phone apps are incredibly helpful.

We have iPhones, so I have no idea if the same apps work on other phones, but here are some we find very helpful.

  • Our pharmacy has an app that we can use to refill prescriptions, determine how many refills are left, see when a refill is complete, and what is waiting to be picked up.
  • The Amazon lets me order all my wife’s supplements at once on a repeating basis.
  • The app from Drugs.com has helped immensely. I am able to keep all drugs and supplements in the app, along with doses, times, notes, etc. The app will print reports that can be given to nurses for entry into their computer systems. It also gives interaction warnings, so when a doctor says they want to prescribe something, I am able to check to see if it will cause problems. This app has literally saved my sanity and on occasion, prevented potential medical issues as well.
  • Speaking of medications, I also use a spreadsheet to keep a daily medication/supplement schedule. What does she take at 8 AM? Noon? 4 PM? Bedtime? This helps me when I have to fill her pill containers on a weekly basis.
  • We plan to start using the intolerances app as we explore my wife’s food intolerances. We are just begining this journey, so don’t have much to report yet.
  • Finally the Apple Notes app. We keep my wife’s surgery history here. We have a note for each doctor with what we want to remember to say and what was suggested or recommended during the appointment. We also have some of her test results here, such as her CYP450 testing. This app allows us to share the notes between phones, so if she thinks of something, she can enter it and it will appear in the copy on my phone. Also, notes can be backed up to the cloud, which is a life saver.

Name the condition

This one came to me on Twitter. Give a name to your condition and associated symptoms. Refer to the name, not your loved one, when it causes inconveniences or disappointment. For example, if you have to cancel plans due to illness and your wife’s name is Karen, say, “I’m a little disappointed that Josephine made us to cancel our plans, let’s hang out at home”. It can take the blame off my wife and shift it to her medical condition. We’ve discussed this, like it but haven’t come up with a name yet.

Self Care — The Caregivers

This is, by far, the most difficult category for me (and still is). You can neglect this aspect, for a time, I did (do), but everyone pays in the end if you ignore it.

As I read through websites and support groups, I found several pieces of advice that all fell into this category, summarized here:

  1. Take time for you
  2. Do not put your life on hold
  3. You Need Support Too
  4. Your Feelings are Real — Don’t Deny Them
  5. Do not neglect your own health
  6. Don’t try to be a super-carer
  7. Do not become isolated, yourself

To me it amounts to, you are human, you have feelings, you have good and bad days, you have finite physical, mental, emotional energy, and you deserve a life. If you don’t take care of yourself, in whatever form that takes, you can’t be a good caregiver, or loved one, and quite frankly the stress will have negative effects on you, your relationships and the people around you.

To be honest, I haven’t quite figured out how to do this yet, to my or my wife’s satisfaction. She worries about the burden I carry in caring for her. I worry about taking time out of housework, attending to her needs, setting up her meds for the week, not being there if/when needed, etc.

Fortunately I am quite a nerd and find everything interesting — I love learning, especially anything science-y. So, I am truly enjoying reading journal articles and blogs about biochemistry, genetics, immunology, Ehlers Danlos, and anything that comes across my computer screen. I have taken to Twitter to share whatever my wife and I have learned, learn from others, find people who want to learn more but don’t know where to look, and summarize the journal articles I find interesting. This is now my escape, what I do to relax and center myself and to be honest, I am quite enjoying it.

However there is something I really have not turned the corner on, if I am being honest. Regardless of how hard we try to make our loved one’s life “comfortable” we cannot work miracles. We can learn enough to work with doctors to address the many symptoms and comorbidites that can arise with Ehlers Danlos, but as caregivers, we don’t have the medical training to “cure” someone with Ehlers Danlos. In fact, at the present time, medical research hasn’t progressed far enough to even give doctors, who themselves have Ehlers Danlos, reliable solutions to completely resolve their own medical issues.

There is no need to be a super caregiver. Set realistic goals. Communicate with each other. Find support for yourself as well. Do what you can, but respect your limits. Remain healthy, both physically and mentally.

Robert Simonoff

Written by

I am a husband and father of loved ones who have a chronic illness called Ehlers Danlos Syndrome. I can be found on Twitter @SimonoffBob

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