I get plenty of emails from people who have a family member struggling with POTS or MCAS, so this post is for them.
Yes, my family struggles too.
I’m sorry to hear this is affecting your loved one. I know it’s hard for my own family to watch me go through this. They get dragged along the ups and downs with me, though in their own way. They are at a distance from my own struggles. They don’t experience my symptoms and can’t completely understand what I’m going through. They remain healthy and keep living their lives. I’m so thankful that they do, but I can’t help but feel left behind. This loss isn’t one-sided. My family isn’t spared their own grief and loss for my old place in their lives, and for the person I used to be. In some sense they have to leave the old me behind. My medical scares can still be traumatic and draining for them. They can become fatigued from the extra worries about me and new measures that need to be taken for my health. The burdens can be emotional, physical, and sometimes financial. The insane American for-profit healthcare system adds insult to injury.
Know there are never-ending cycles of progress then setbacks.
I think this needs to be the expectation. Even if someone with POTS is making general positive progress over time, there are inevitable setbacks. Triggers happen, flares happen. Even the process of trying new treatments and drugs is trial and error, which means there are ups and downs. Setbacks after progress seem to be the intrinsic nature of the condition. I think grieving with these disorders can be a cyclical process, because once you start feeling better you feel hopeful, then as the condition waxes for any number of reasons, you get to experience some loss again.
How I’m doing
Many people are curious about how well I’ve fared. My condition didn’t get really bad until I was around 25 or 26 years-old, so I feel lucky in that I had manageable (yet undiagnosed) symptoms before that and was able to get in quite a bit of living and traveling. Weird to feel lucky at all though, right? Truly though I’m still young and incapacitated by my limitations. I remain thankful that I’m not in pain every day and that I have a supportive family and husband. Lucky I don‘t have to force myself into a stressful job to pay massive bills. Even still, life isn’t easy. I’m in a place where I feel safe enough within my new constraints of things like temperatures under 76 degree and controlled physical exertion. I have to actively manage my condition, and it’s an unending process of tweaking as it evolves and morphs. I’ve been repeatedly traumatized by flares, where it feels like I’ve been hurtled back to the edge of an abyss. This means I have the additional task of beating back the PTSD and anxiety on top of trying to improve my physical symptoms. My experience in a word: sisyphean.
Right now, I can walk at least a mile most days, do pushups, do normal chores around the house, walk stairs, and even run small errands on most days fine enough… not as vigorously or easily as I once could. I can do tiny kayaking sessions again! These are victories for me. I can endure most scents, have never had to use my epi-pens, but my new baseline remains a dim glimmer of my previous health. Life with POTS still feels like whack-a-mole, and I’m still easily and unpredictably triggered. As I find improvement in some aspect like physical endurance, something else like vomiting monthly comes up. I was doing absolutely fantastic a couple years ago (for POTS), but all of my progress was erased after mold exposure shortly after moving into a beautiful historic home. I was feeling well enough to take risk and move out of town, only to be met with huge disappointment. Benadryl had been stopping attacks nearly immediately, giving me a reassuring sense of power and control over my body. Unfortunately something with my biology has changed and that’s no longer the case. It’s often up, down, then back again and my loved ones are along for the ride. Stability is a luxury I never appreciated as a healthier person. One consensus in our patient community is that the unpredictability of our symptoms is one of the worst aspects of these conditions.
The fact still is that I’m nowhere near as healthy as I once was, but there is always hope for a “close enough.” I feel like my expectations are pretty realistic. A lot of what other people may consider crumbs, and what I used to consider crumbs, I am now so thankful for. Acceptance is really hard, but perspective helps. There are millions of people living with this in the USA, and millions more around the world. When I’m suffering I think of all the other people that exist in that same moment feeling the same thing… POTS or otherwise. And when I feel like my life is incredibly lame I remember that a huge majority of people just want to come home from their job and sit on the couch and watch Netflix… that kind of feels like a great equalizer. Happiness for anyone is still found in so many simple things.
How to Help Your Loved One
The nature of being chronically ill, especially with an invisible illness, creates a world in which you’re continually met with skepticism and not just from your average Joe, even from many uneducated doctors and medical professionals. It can easily be emotionally alienating and exhausting. When the doubters are your own family members, it can be devastating. Know that trying to be heard and understood is often a fight you have little energy for, especially when you’re just trying to endure the physical symptoms. It’s very easy to feel alone and hopeless in that dark hole. Please read “What to Say to a Chronically Ill Person”
Your job as a friend or family member is to acknowledge, understand as best you can, and help where you can. Although vulnerability can be a scary place, you need to go there.
Acknowledge the reality of the situation.
I’ve gotten many emails from family members painfully hopeful to hear that I’ve gotten better, and that there’s essentially a cure, or some off-beaten path to getting back to normal. They’re hoping I’m living proof that their loved one can escape their chronic illness. They want hope, but denial is also common in this process. I have actually been to a support group where the mother of a fellow POTS patient told ALL of us with acerbic confidence, “don’t worry you’ll all get better, you will, just hang in there!” The first step you need to do is to take a step back and acknowledge and accept this very unpleasant fact: THERE IS NO CURE (yet). Let that sink in. It’s a scary thing to admit, but you need to do this. You need to do this because denying a patient’s reality is one of the absolute worst things you can do to them emotionally. You may think you’re fostering a healing environment, because of “the power of positive thinking.” I assure you that you are not. It’s more likely to be devastating. Acknowledge that you are scared for your loved one, that you’re devastated yourself, sad, tired, overwhelmed.. whatever it is that you are- put words to it and accept it.
Once you do that, you can move forward into a more balanced positivity! There is no cure yet, which can be scary and heartbreaking for everyone involved, but there is hope for the immediate term because now that there’s a diagnosis with many specific treatment options that can make things much, much better. And there is still hope for the future because there is a lot of exciting research happening for these conditions specifically and much, much more in the general fields of immunology and neurology that will surely yield even better treatments in time, and maybe even a cure. As I was going through my traumatic transition into chronic illness, having certain people close to me be overly cheery and denying the awfulness of the diagnoses felt incredibly hurtful and in a way insultingly dismissive. I felt pushed away and alone, because I was. I wanted to feel connected, but the inappropriate optimism separated us and left me alone in my fear and turmoil. This happened because they weren’t ready to accept the reality of my diagnoses.
Validate and acknowledge your loved one.
Ok so you’ve accepted this isn’t going to go away. Next, in similar vein, DO NOT deny the reality of how hard things currently are, because that only isolates.
Imagine you have the flu, the worst flu you’ve ever had, the kind where you can barely get out of bed to use the bathroom, where you can barely eat, barely focus. Now imagine you get the flu all the time and it pops up instantly at a moment’s notice without warning and lasts at least a few days. A huge number of triggers can cause this flu. Now imagine a family member calls and says, “You’re hopping on that flight to visit for Christmas tomorrow, right?!” You explain that you have the flu, but your family pauses, because in this reality the flu is not a well-known illness (and not contagious) and your family asks, “How do you spell that again?” Oh yeah they recall, “You still have that? But I thought you were on that medication for it, what’s it called? Oh yeah, tamiflu. Can’t you just take that? We’re all going to be here. What’s the problem? It can’t be that bad, and anyway, you’ll get better soon, just tough it out, Christmas is only once a year!” You obviously know the flu is absolutely awful, your informed doctors know it’s awful, but the crazy thing is that your family isn’t getting it. They seem willfully ignorant. I hope you can see how painfully isolating and crazy-making this can be.
Some people close to me used to try to sugarcoat things or deny how hard things were, but I had them watch the Brene Brown video I share below and it seemed to help. Firstly, I needed my pain to be believed and accepted. I needed to be heard. I wanted my experience to be understood. I didn’t want people to come to me with inane suggestions or nagging about things that I already knew, as if they were solving and smothering my complaints and pain. I wanted helpful thoughtful gifts of time and even just things that would make my life easier. Constructive help if anything. Nothing patronizing. I didn’t want to be indulged and seen as a victim, but I needed steady people who were rocks and there to help… and to help me, help myself. People right there next to me helping me figure out a plan and getting it done. Make sure there’s no pressure or guilt from you to do things that they explain are hard for them to do– a classic seems to be pressure from family to fly or do other long-distance travel to visit. Find alternatives to whatever the challenge is. For example, express that you’d love to have them visit if they feel up to and offer an alternative in case they don’t feel well enough like a livestream video, or have the healthy family members visit in their town if that takes the burden away. Find ways to accommodate. Since stress is a common trigger, the simple act of removing social pressure can be a huge relief both emotionally and physically.
Get them support.
Find options for quality doctors and therapists if your loved one doesn’t have them already. That’s a big task in itself, and definitely not something a sick person wants to deal with. Therapy was HUGELY helpful for me, but it’s important to have the right therapist. It can treat stress, which is a huge common trigger. It seems critical for both patients and their caretakers. If you haven’t seen one before it may be harder to start. For chronic illness, finding a therapist seems just as imperative as finding competent specialists. Without the will to keep fighting another day other medical treatments pale in relevance. Trauma is incredibly common. Managing stress and processing the grief and traumas should be a huge priority.
Expect this to be a challenging transition into a tougher life, especially for a young person who is trying to establish themselves. Having the right kinds of friends is huge. Many of my friends from my old life fell away as I couldn’t keep up with the funfests life had to offer. It was really hard and simply depressing. That’s loss. If a person’s life is significantly impaired, I think it’s safe to assume that your loved one is experiencing immense loss as they come to terms with their new reality for the foreseeable future.
Help identify any triggers. Provide your valuable perspective.
So you’ve watched your loved one fall into this thing called chronic illness. A huge thing our friends and family can provide is their outside perspective, because it can be so hard as the person experiencing the illness to see everything objectively. When I was crashing in that house we had just moved into, it took a friend of my husband’s to mention checking the place for mold. Sounds crazy but neither of us had that thought. At that point we were busy surviving the hospital. You can help them figure out what might be triggering their latest flare. Maybe they just moved into a new place where you suspect some environmental factors, maybe you see that their job or volunteer work correlates with worsening symptoms. Maybe you see a change in their diet is correlating to some ailment. Your objectivity and perspective can be incredibly valuable. You can also see their situation with fresh eyes that can shed light on something. Present your ideas and insights gently and with empathy.
Get specific instead of saying, “If there’s anything I can do, let me know.”
Ok, this statement is bandied about. At first blush it sounds exactly like the right thing to say, but take a closer look and you’ll see that it’s often an easy, passive and unconsidered response. It puts the burden on asking and finding a way to contribute on the person needing the help. It’s often used as a way to dodge actually helping, but it’s often said because there isn’t an obvious thing to offer in the moment. As a sick person I find ways to get by, and I’m not going to ask for help unless things are pretty bad. Instead maybe say, “I’d like to help. How are things going? What’s been hard for you lately?” Then take a minute and think about what you can specifically offer. Even if the person doesn’t take you up on the offer, I’d bet big that they feel comfort knowing that there’s a genuine offer of help, and that someone genuinely cares.
Be honest about what you’re willing and able to offer. It’s been incredibly painful for me to hear this general offer to help in some crises, only to encounter avoidance, dismissiveness and resistance when I did come back later to… let them know that there was something they could do to help. Empty offers can be incredibly hurtful to someone who is already vulnerable. Think about what you’d expect from them if the situation was reversed. Are they really asking for too much, or are you overwhelmed and finding it easier to avoid the situation? If it feels like your loved one is asking for something that you can’t do or don’t want to provide, know that it’s ok to have your boundaries and limits, and know that you don’t need dismiss their needs or be dishonest when declining. White lies are often transparent and painful. Maybe you can help them figure out a way to get their need met without you. Let them know what you might be able to offer instead.
- What kind of food can you eat these days? I’m going to make/order something for you and send it over.
- If you ever need a ride to the urgent care, or help when you’re having an attack, here’s my number, give me a call I’m usually nearby on weekdays. Don’t hesitate to call me!
- Would you like me to go to your next doctor’s appointment with you? I’m available most Fridays.
- Would you like some help getting groceries or picking up an Rx? I can pick things up on my way over to visit today.
- I can walk your dog on most Tuesdays and Thursdays if you’re not up to it.
- I’d like to come over and do some laundry and chores for you this weekend.
- I have some great movies I think you’d enjoy while you’re in this flare. Can I send them along?
- Whenever you’re feeling stressed, I’m here, give me a call.
It starts and ends with empathy.
Really understand what the difference between sympathy and empathy are, and don’t forget to have some for yourself. Being close to a loved one who’s struggling is hard too. You’re probably experiencing some of their losses and frustrations right there with them, vicariously sometimes, but you’ll also have your own distinct challenges. Your own friends and extended relatives may cast judgements and distance themselves. Caretaker burnout is a very serious thing. I can’t share this video enough. Have empathy for your loved one. Have self-empathy too, because we can be harder on ourselves than anyone else.