Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) are frequently playmates in a patient’s system. Their interaction can worsen symptoms and send patients through a maze of doctor visits trying to figure out what’s happening as their quality-of-life decreases.
When you get playdates like this going in your system (these are not the only chronic conditions that often occur together), diagnosis can be difficult and take weeks, months, or years. It’s not the kind of thing our diagnostic system is good at. And once you get a diagnosis, the only solution may be to manage the conditions.
Have these? Want to scream? Yeah, I know. I’ve had two conversations this week with people who walk this tightrope all the time. It can be hard and exhausting. If you then meet resistance from health professionals when you request measures to avoid items that trigger a flare, it can be beyond frustrating. And, if you’re female, your concerns may be dismissed altogether.
None of this means you’re crazy. If you feel dizzy, you feel dizzy. If your right eyelid sometimes swells and feels heavy, it does. If you have rashes that will not go away even with prescription medications, there’s probably a trigger that’s causing a flare of some sort. If the room spins or you faint, it’s probably not all in your head. And yet, some physical reactions can stimulate emotional responses.
So what should you do?
Visit a physician. If you suspect you have POTS, MCAS, Ehlers-Danlos Syndrome, or Long COVID, search for physicians who specialize in these conditions. If there are none in your area and you have the ability to travel, visit one in another area.
If you can’t afford to travel, but have a medical school nearby, reach out to their research arm or see if you can get your case presented at grand rounds. The goal is to get more eyeballs on the problem.
Learn as much as you can. While it’s best to leave the diagnosing to the professionals, you are a part of your own health team. If you have information that you believe may help, it’s okay to provide that. If you have questions, ask them.
Follow dietary recommendations that can help. With MCAS, this means avoiding histamine containing and liberating foods. It may also mean avoiding certain medications and ingredients in personal care products. With other conditions, there will be different lists.
Talk to people. Find an existing community or compare notes if you run across someone else who experiences similar symptoms. People who are managing related conditions may be able to suggest triggers you have overlooked or symptoms that you thought were unrelated.
Finding a community that’s helpful can take some work and flexibility, but it’s rarely impossible. Stick your toe in the water and only wade in when you feel comfortable.
Establish a routine. Include eating at fairly regular intervals, drinking plenty of water, good sleep habits, and down time to let your system regroup.
Change what you can. If there are stressors you can let go of, do. A system that’s already overloaded will be more likely to have a lower threshold for triggers.
Trust yourself. I know when your gut is cramping and your vagus nerve has sent the room spinning, you may feel both sick and crazy. You are not. Something needs attention.
When something needs attention and you find yourself being summarily dismissed, you may need new playmates. A supportive community and a curious healthcare team can be just what the doctor ordered.
It’s okay to acknowledge the toll it takes to be healthy. Huh? Sounds wrong, I know. If it’s taking a toll, is it healthy?
In an ideal world, discovering, then practicing, habits that lead to better health would not take the toll that it often does in the real world. This would be true even when a patient has an underlying condition that requires specialized steps toward health.
Diagnosing would look for the root cause. Diagnosis would be efficient, kind, and lead to individually tailored wellness plans. Change in standards of care would happen in a reasonable time frame when supported by research. Support systems would be readily available. Friends and family would be accepting and helpful. Institutions would not just require, but happily offer, accommodation.
If you have any sort of disability, chronic disease or condition, allergy, sensitivity to foods or medicines or chemicals, it is unlikely that you haven’t had a fight on your hands to get one or more of the above. I’m reminded of a three-year-old boy in my state who was told by a restaurant that he could not eat with his feet in spite of the fact that he has no hands. (1)
Like that situation, some fights are large and public. But often, the struggle is quieter and hidden – having to convince your doctor that any macrolide antibiotic makes you puke or itch; trying to get your healthcare provider to mask because you care for an immunocompromised family member who you could expose to everything the provider has been exposed to; being told your symptoms are all in your head when you’re suffering from a parasite; seeing the eyerolls when you push for food that doesn’t hurt you. When combined, insidious, dismissive, and cruel responses to your health needs over time may consume more of your day than the healthy habits you implement.
Does that tip the scale in favor of the status quo? Of course. Fighting for yourself may be a positive step, but it takes energy. Healing takes energy. Being proactively healthy takes energy. Your job and family take energy. And, as we all know, energy stores are limited. Not only that, emotional energy and physical energy are linked so when we become discouraged, we may also feel physically tireder.
Even those with seemingly boundless energy may be forced to skimp on time they would otherwise spend in creative, life-enhancing endeavors. And the thing is, when we get overwhelmed, sad, depressed, or grief-stricken by a situation we didn’t create but are doing our best to navigate, we often get ostracized, criticized, abandoned, or demonized. It’s hard not to take that personally. But taking it personally only exacts a greater toll on our psyche.
When we’re exhausted, marginally supported, and feeling as though every day includes a struggle, it’s impossible to see that the people, institutions, and systems who increase our burden as the problem. But very often they are:
People may not face our truth because it challenges their beliefs, comfort zone, or reality.
Institutions may not address their shortcomings because changes challenge the bottom line, top management, or generally accepted myths.
Systems may not accommodate because they need an underclass on which to pin flaws, cracks, or deliberate inequities. The needy are to blame for their own problem. If you exact a great enough price, this can even become a self-fulfilling prophecy.
Humans are adept at creating categories that allow us to feel good about avoiding responsibility, slighting those who are less fortunate, denying others’ reality, and dismissing others’ pain. In short, we’re great at self-deception. And, as a whole, we increasingly lack the courage and fortitude required to question ourselves.
Pretending something isn’t true or doesn’t exist is a fast and easy way to let ourselves off the hook and ignore those who suffer the weight of what is. In a world that prefers pretend, it’s no wonder the toll of trying to be healthy and maintain healthy relationships goes unacknowledged, or is dismissed, or minimized.
If you begin to feel the cost of trying to be healthy may not be worth what it costs you, we get it. We struggle with the sense of grief and loss that comes with this recognition. We feel anger that over 20 years has brought little change to how disease is approached. And we know the exhaustion that comes from advocating for ourselves through systems that remain stacked against us.
The toll it takes to be healthy in an unhealthy culture is huge, not because there’s something inherently wrong with people who struggle, but because the deck is stacked against them. (Yes, there are some who will use this statement to avoid responsibility for not trying.) If you have no hands, we shouldn’t make it more difficult to eat with your feet. But we do.
The toll is real. It’s okay to observe this in action, feel how you feel about it, and say so. If someone chastises you, it does not make your experience wrong. It does not make speaking out wrong. It merely tells you something about who you’re dealing with. You can choose what to do with the information.
Beyond yourself, supporting others who are in a similar boat can be a kindness rarely afforded and hugely appreciated. When you have the ability to provide support, please do. When you need to pull back and reserve energy, it’s okay to say so.
Granting each other grace encourages healthy habits. Each tiny kindness lessens the price of the journey. As you become aware of the toll it takes, please remain aware that you and your health are worth the cost. You deserve to be your best!
My email inbox has seen an uptick in training opportunities related to reducing abdominal pain through trauma treatment. I haven’t attended any of these, but it’s entirely possible that some forms of abdominal pain are caused, or exacerbated, by a history of trauma. When that is the case, it stands to reason trauma treatment could help alleviate symptoms.
An interesting study is taking place in The Netherlands hoping to gain insight into the effectiveness of Eye Movement Desensitization and Reprocessing (EMDR) treatment on abdominal pain experienced with Irritable Bowel Syndrome (IBS). The results could bring the possibility of additional tools to the clinical treatment of IBS. Given that there are currently few effective treatment options, these would be welcomed.
EMDR isn’t the only trauma treatment that may be effective. Attachment healing could be helpful. Somatic Experiencing could be another option. These therapies can be used in combination or succession to create individual trauma treatment plans.
Will this mean that you can forget about restricting your diet and go back to eating whatever you want? Not necessarily. But it may mean reduced physical pain and less emotional stress without a need for pharmaceuticals and their side effects. And it could mean it’s possible to reintroduce some foods without dire consequences.
More research is needed before the scientific community can make any specific determinations. And research moves slowly. In the meantime, if you have experienced trauma, you may want to explore some of these treatments for relief from any lingering effects. Even if they don’t change the way you need to eat, treatment could still be beneficial.
Another option is to participate in a scientific study. As a participant, you will contribute to moving science forward. Not all studies require you to consume medication and all require informed consent. The NIH lists several resources for finding and being matched with a study that fits your circumstances.
The more we learn, the more options we have. That’s why scientific advances are so exciting! We don’t always get the specific answer we desire, but any progress is progress. I’m thrilled by the changes in trauma treatment and the possibilities they bring for expanding the number of foods I can enjoy.
While restrictive diets may continue to play a large part in eliminating various types of abdominal pain, it’s hopeful to see research that is exploring nonpharmaceutical alternatives that could have additional benefits. If trauma treatment can decrease physical abdominal pain along with emotional stress, that’s a big win!
This post originally appeared here in 2015. Since that time, I’ve served as a hospital advisor and member of a Quality Experience and Safety Team Committee at the same hospital. I am not a healthcare professional. I was there to represent patients and families.
At the time, this type of representation was seen as valuable. I say that, there was definitely a period of skepticism within QUEST team as to whether my contributions should be considered. Nonetheless, for a period of time, I felt my contributions to policy made an impact.
Due to family obligations, I stepped back from that committee after a few years. Then came the pandemic and a shift away from patient centered care. There was still lip service, but the division that was happening in general began to happen in the hospital advisory council.
Pointing out an area of weakness was vocally called out as complaining. Vulnerable members were left hanging without resources. There was no leadership to facilitate prickliness.
What had been a room in which I felt all opinions were valued and explored became a place I felt misaligned, uncomfortable, and helpless to make any positive advances. When I resigned, we were no closer to an easy to navigate health system than we had been when I started.
Could I have stayed and fought? Of course. But from the time I was small, I’ve been put in situations where I had to fight for agency, dignity, safety, and a voice. It’s exhausting to always be fighting. It takes away time and energy that can be spent in productive and enjoyable endeavors. And that is where I prefer to invest.
This morning, I read a post on Bluesky from a LongCovid patient who is exhausted from trying to find a doctor that acknowledges and understands how to treat her condition. She may or may not have had the life experiences I have, but she and almost 9% of adults in the US who have ever had COVID now must fight a lengthy, exhausting fight to find treatment that will restore some quality of life.
My heart breaks for all of these patients. I’m so sorry for the misinformation and horrible policies that have contributed to their plight. While it won’t take away their struggle, perhaps something from this old post will help:
Navigating medical care can be an exhausting process as any celiac, IBS, Crohn’s, diabetic, or cardiac patient knows. As this year draws to a close, I’m looking forward to the renewal a new year promises.
I spent the past few days with my mom in a rehab facility. She is a dialysis patient and last week had 3 small strokes. On the phone from the ambulance as she was transported to the hospital, she sounded ok, but said her right arm and hand wouldn’t work right. Five days later, she arrived at a facility where she could receive physical therapy multiple times per day. It was Christmas eve.
Of course holiday staffing varies from the norm. On Christmas day, our nurse was in charge of 60 patients. There are 480 minutes in an 8 hour shift. That means, she could spend 8 minutes per patient even if she didn’t take a single break. We used more than 8 minutes of her time when my mom passed out in the wheelchair from low blood pressure. Needless to say, there is no time for the staff to make sure Mom eats or gets enough fluids.
My mom is lucky because at least one of us has been able to be there for a portion of every day. In spite of that, it has been difficult to get enough information together to assess whether a bad day is just a bad day, or the beginning of a downward trend. It’s hard to know whether we need to quit worrying about the food on the cafeteria tray and just get some Power Yogurt down her. We know she’s not getting enough protein to fend off infection for long. Unfortunately, our experience is not unusual.
I learned long ago when I had a rare parasite that caused recurring pneumonia that when you’re weak and in pain, you must have an advocate with you every step of the way or you can quickly be dismissed and become lost in the system. My lawyer boyfriend was with me when I was trying to get a referral to a large diagnostic clinic. He could barely contain his laughter watching me bite my lip when my pulmonologist said, “If you didn’t have an intelligent boyfriend here with you, I’d say this is all in your head.” And he wasn’t the first physician to say that during my two year ordeal.
I was young, healthy, went to the doctor promptly and still almost died with the first pneumonia after having been diagnosed with a bladder infection. I actually had psittacosis from Chlamydia psittaci which had become encapsulated in a recently capped tooth. This experience made me acutely aware that navigating medical care is best played as a team sport.
During that two years, I read all of my medical charts. This was also an eye opening exercise. The history recorded in the charts often wasn’t even remotely related to the history I gave. I realize my symptom group was unusual. Well, actually it wasn’t for someone with psittacosis, but it was unusual enough for one nurse to determine that I was just a bad historian.
At some point, most of us will need the expertise of the medical system. Without it, we do not have the depth of knowledge, necessary labs, sophisticated testing equipment, or access to medication that may be necessary to get us through a crisis and put us on a path to improving health. Is there anything we can do as patients to make sure we have the best chance of getting optimum results from medical care?
While nothing will guarantee a certain health outcome, here are 5 things you can do to facilitate a more positive journey in the healthcare system:
1. Choose a friend or family member you trust to act as your advocate in any major medical event. The best advocates care about your well-being, can remain calm in a crisis, are good listeners, can process and prioritize information, are unafraid to ask questions, and will tell you the truth in a kind manner.
2. Keep a daily journal of your condition. Try to record facts without interpretation. For example, if you feel your energy level has significantly dropped, record how much sleep you get, when you get it, how many fluids you consume and what kind, what you are eating, how much and when, how much exercise you get, what kind, and when you get it, then note how tired you feel on a scale from 1 – 10.
Doing this every day will help you have a realistic picture of what is happening over time. It will also help identify areas in which a change in routine may help improve your symptoms. If you are too weak to do this, your advocate or caregivers can make notations for you and record their observations as well.
3. Be informed. Ask questions. Make decisions. You are ultimately in charge of your healthcare. If you do not ask questions, you may be passively agreeing to treatment you would never actively choose. It can be helpful to think of yourself as pilot in command.
In an airplane, the pilot in command (PIC) is the person who makes the final decision about what will happen in an airplane. He can accept or refuse instructions from air traffic control and he is in responsible for all operations of the plane until he actively turns over command to another pilot by saying something like, “your plane or your aircraft”, and hearing “my plane” as a response. He then repeats, “your plane”. This is called a Positive Exchange of Controls.
If air traffic control says, “23 Charlie Tango cleared to land 22 left” it does not mean that the PIC must land the plane. He can request a different runway. If he is not cleared for the requested runway, he can initiate a go-around.
You are the pilot in command of your healthcare. You will receive lots of information from instruments and personnel. The more informed you are, the better the quality of questions you can ask and the better resulting decisions you can make. Your doctor is air traffic control. From his vantage point, he can see traffic and the runway better than you can, but he won’t know that you had a fuel leak and do not have enough glide distance to make the runway without input from you. You have the best odds of a safe landing when you work with your doctor as a team to identify alternative landing areas. Once determined, you decide the destination with which you feel most comfortable. You inform the doctor where you prefer to go from here, then you focus on the procedures that will result in your best chance to safely reach the landing area.
Just as it is common to think that air traffic control actually means the tower is in control, many patients do not recognize that they have the choice to request a plan that fits them. More typically, they defer to whatever initial plan the doctor proposes while they’re in her office and then fail to follow that plan once they get home and it doesn’t fit their lifestyle. This can be detrimental to any long-term progress.
4. Treat everyone kindly beginning with yourself. When you have a chronic condition rather than a medical emergency, it can slowly eat away at your energy and attitude. A desire for relief may lead to impatience with medical staff. While you may feel justified in taking your frustration out on nurses, techs, or aides, doing so will not encourage them to treat you kindly.
The simplest way to prevent reaching the point at which you lash out is to recruit consistent, adequate social, emotional, psychological, and spiritual support. These needs are very individual, so a high level of self-awareness will be helpful in determining what and how much you need.
Incorporating a regular exercise, meditation, or yoga practice can strengthen your connection to internal resources. You may also find restoration in activities like gardening, cooking, writing, reading, fishing, walking, painting, woodworking, swimming, dancing, volunteering, or playing with your children or grandchildren.
5. Decrease the need for medical intervention. You don’t have to worry about navigating the medical system when you’re healthy enough to only require routine check-ups or regular monitoring. In some cases, significant lifestyle changes can minimize the need for medical intervention. The effects of regularly eating a balanced diet of fresh foods, drinking plenty of water, getting adequate sleep and exercise, and filling our lives with passion and laughter should never be underestimated.
The new year is always a great time to wipe the slate clean and do things differently. I hope you’ll find these tips helpful the next time medical care is required.
2. Keep a daily journal of your condition.
5. Decrease the need for medical intervention.