Loneliness and Isolation

If you have any kind of a chronic illness, especially if it affects your functioning, you may have experienced the not so pleasant feelings of loneliness and isolation. And if you have a rare disease like Mast Cell Disorder, Ehlers-Danlos Syndrome or Dysautonomia, it is compounded by much of the medical community not being familiar with it plus often taking years to be diagnosed.

As it that isn’t crazy enough, family and friends sometimes don’t believe your symptoms, think your exaggerating, refuse to learn about it or treat you differently. I have some friends who have disappeared because I can no longer go out and keep up socially.

Sometimes it can cause problems in your relationships when your role totally changes from full-time employed person to one who needs assistance. If you were the caregiver, like me, changing roles to the one that needs the care is so very tough on everyone.

So if you find that you are experiencing loneliness, despite family being present and isolation from “normal” people, I have some thoughts about how to gently ease the pain. Remember this… often people’s reaction to us is out of fear… What will happen to us? Will we get worse? Will there be more financial issues? Will my loved one die? How can I work and take care of them?

  1. That feeling of loneliness is just that… a feeling. Being lonely triggers that scary feeling of abandonment that many of us have experienced. As little kids, we fear our parents would leave us, boyfriends/girlfriends did leave us, friends in school shunned us for new friends, etc. Remind yourself it is YOUR feeling, not a fact. You can be alone and not lonely.
  2. We often isolate. Out of fear, from lack of energy, frustration from others response to us, feeling not worthy of others friendship. Reach out. First start in a safe place like a support group for your disorder. Online can be less threatening. Then, as you make online friends, see if there is a local support group to meet with the friends in person. If not, check to see if any live in your area. That’s what I did and met the most amazing woman. She came to my house and we had a wonderful visit.
  3. Even though we can feel so stinking sick sometimes, focus on positive, upbeat things in your life. Look hard. We all have them. Your kids are beautiful. You spouse is hard working. Your apartment is cozy. Your dog is loving and affectionate. It doesn’t matter how miserable your situation seems at the time, you do have good things happening. I write in a gratitude journal every day. Some days, I can only write, “I woke up today.” When you shift to an attitude of gratitude, you are more fun to be around.
  4. Pay attention to your self-talk. Critical messages like, “No one will want to spend time with me.” is self-fulfilling. Or, “I’m in such pain, I’m not good company.” Give this a try, “I’m going to call my friend and we will talk and laugh.”
  5. When you are struggling with a chronic illness, you want to be able to talk about it. Share freely with others who are struggling too. Of course you need to let your family know what’s going on, but don’t turn into the “chronic illness personality”. All nurses are familiar with this. Being sick can transform you into a cranky, complaining, unpleasant person. When I worked in the hospital, nurses would know quickly who the chronic patients were. I vowed never to turn into one, no matter how bad my disorders progressed. Talk about something other than your illness. Be a bright spot, not a dark cloud. Be someone others enjoy being around.
  6. Steer clear of the toxic people. If they are family, decrease the amount of time spent with them. If they are friends, boot them out. Nurture any and all loving, caring and compassionate people, both in person and online. Support is what we are looking for, not someone telling us what we really need to do is heal ourselves and stop this nonsense.
  7. Being alone and in solitude is not being lonely and isolating. The difference is how you feel. I treasure my alone time and solitude. But those times I have isolated and felt lonely, there was always something else going on. Usually some fear that needed addressing.
  8. Keep yourself busy, even if it’s in your home. I started coloring with colored pencils in adult coloring books and LOVE it. I also adore all of my plants and care for them with love. Even if you are bed-bound, there are so many things you can do. I know some masto friends who do amazing knitting and crafts.
  9. One of the most effective ways to channel feelings and emotions is through journaling. It can sound so daunting, especially when you don’t feel well. I tell everyone not to be a perfectionist. Write one word. I have been journal writing for years. Sometimes my one word is an expletive. That’s the kind of day it is. You don’t have to write paragraphs, or even sentences. Write a couple of words. Releasing thoughts onto paper is very therapeutic.
  10. Take supreme care of yourself. Eat the best food you can, learn stress relieving techniques, drink plenty of purified water, exercise (even baby steps) and manage your disease the best you can. Some day, you will feel well enough to venture out to be with your friends. Until then, do what I do, have them over to your house. Oh… and those friends that don’t bother with you any more because you’re sick and can’t socialize… they weren’t really friends anyway.

Reach out. Find someone to share joy and happiness, not misery. Sending love and hugs.journaling


Finding Doctors

Having a rare disease can be a frightening journey at times. Compounding that fear is finding doctors that are familiar with your particular disease or disorder. When my kids and I were diagnosed with Ehlers-Danlos Syndrome (EDS), I tried to find a specialist here in upstate New York, only to find out, one did not exist. Since we were diagnosed in Manhattan by a whole team of doctors, going there for each family member didn’t seem reasonable.

Ironically, I was an orthopedic RN, working with some really good orthopedic surgeons at a well-respected trauma center. Unfortunately, EDS is something they were all familiar with but not one had kept up with the very latest information on managing the symptoms. I had already had over 20 orthopedic procedures by the time I went to the Ehlers-Danlos National Foundation (EDNF) conference and listened to the physicians who spend their medical practice studying EDS and caring for us. Not one surgery was successful and now I knew why.

It took over 20 years to be diagnosed with Mast Cell Activation Syndrome (MCAS) and Dysautonomia, despite repeating my symptoms numerous times to physicians. What can we do to find the physicians that are most knowledgeable about these disorders?

  1. Connect with people through the disease/disorder networks: EDNF, The Mastocytosis Society (TMS), Dysautonomia International or Dinet. The members probably have already done the leg work and found the most effective doctors.
  2. Find a primary care physician who is at least open to learning about your rare disease. I’ve had more than one say they remember learning about it in medical school but have not had a patient in their medical practice… yet. Don’t shy away if they say they have no patients with EDS, Mast Cell Disorders and/or Dysautonomia. Ask if they are willing to learn more about them.
  3. My neurologist knows migraines inside out and upside down. But he only vaguely knew of mastocystosis and never heard of MCAS. But he is very willing to read anything I bring him and intently listens to all that I share. Winner!
  4. TMS, Dinet and Dysautonomia International have physician referral networks. As more physicians are specializing in that area, they are added to the list. EDNF has a EDNF Center for Research and Clinical Care in Baltimore, MD.
  5. If you can possibly manage it, go to the learning conferences. Some offer DVDs post-conference for those that cannot travel. My geneticist, Dr. Jeff Milunsky, from Cambridge, MA spoke at an EDNF conference. He is a rare find; not only does he diagnose EDS, but he treats the many symptoms. He has made a significant difference in my functioning. Even more impressive, he understands mast cells and dysautonomia!
  6. Never, ever give up! Even if your insurance company won’t allow you to travel out of area for specialist care, there are ways to maneuver around the HMO rules when the care you need is not provided in network. And open enrollment time is here. Although more costly, PPOs typically offer more options for out of area.
  7. As more of us are diagnosed and require continued medical care, our disorders will be more commonly known through the medical community. In the meantime, ask questions. Don’t be intimidated. If I had asked my orthopedic surgeons how many successful  surgeries they had done on EDS patients, I may not have so readily agreed to all those procedures.

So I end with a silly picture of me at my primary care physician’s office, who has seen me much more than he ever expected when he agreed to take me on as a patient. Sometimes I get frustrated with him and sometimes he with me. But we let each other know. Communication, as in all relationships, is so important.

Jan at doctor's


Do You Know Your Physical Limits?

One of the most challenging and frustrating things I’m learning to better manage my Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS) and Dysautonomia is knowing my physical limits. Whether you have one or all three of these disorders, it is crucial to figure this out. Do you know your physical limits?

I was always a very active person. As a child, I was the busy, constantly moving, energetic kid. I’m a twin and the family joke was whatever my sister was doing, I was physically doing more. I started running in my early twenties and ran through all of my pregnancies. My brother-in-law who used to live in the apartment under us in the early years of our marriage, jokingly said “Every time you turn on your lights, you turn on your vacuum.” Working as an RN, I actually enjoyed the non-stop work, often signing up for extra shifts.

But then… my EDS symptoms continued to get worse. My joints were dislocating more and more. My orthopedic surgeon not so gently suggested I leave nursing before I did more damage to my body. What??? Stop running! What???

Fast forward a few years and I’m diagnosed with MCAS and Dysautonomia. Triggers, triggers everywhere. Exercise, heat, humidity, friction, pain, fatigue and of course, food. As I struggled through this learning curve of finding triggers, I have also been trying to determine how much I can actually do before my body rebels. I’m not very good at it yet.

I’m a caretaker by nature… always have been. It is utterly painful for me to sit… and sit and sit. I want to get up and DO. My husband gets so frustrated with me because he sees the aftermath of my activity. I’m much better with housework. I finally can JUST dustmop the hardwood floors and dust the furniture the next day. I alternate laundry days and cleaning the bathroom days. BUT… if I go outside in my yard, I lose tract of time. I love being outdoors and working in my flower beds and feeding my birds. My husband keeps suggesting I set my phone timer for 30 minutes and sometimes I remember. But sometimes I’m pulling weeds and an hour and a half go by.

If you don’t feel any reaction during the activity (I don’t usually), it’s very tough to gauge your time according to your body’s symptoms. The crash shortly after, whether pain, dropping blood pressure, itching, nausea, etc. is the clear sign of going past your physical limits. So what I’ve been doing is keeping tract of exactly what I’ve done, how long I did it and what was my reaction. The next time, I try to cut it in half. When I do it, I am successful. A work in progress…

I’d love to hear your experiences.bird feeders




Do You Feel Alone?

Having a chronic illness, especially a rare one like Mast Cell Disorder or Ehlers-Danlos Syndrome or Dysautonomia may cause you to feel alone. There are not many physicians that specialize in these disorders and many of us spend years, if not decades, feeling sick and going from doctor to doctor, only to be told there is nothing wrong with us.

You will hear me say this over and over, but I do not believe they are so rare. I think they are grossly underdiagnosed. Because the symptoms can overlap with many other conditions, they can be difficult to diagnose. Mast Cell Disorders and Dysautonomia especially are not disorders that doctors see in their medical practice and “sort of” remember something about them from medical school.

Whether you have one of these disorders or all three like me, having significant symptoms that the majority of the medical community either don’t know about, don’t understand or discount can be frustrating, frightening and isolating.

I think the very worst is having family members and friends who either just don’t want to learn about it, think you’re exaggerating or straight out think you’re a hypochondriac. I used to spend way too much time educating them, explaining symptoms, reactions, reasons for not being able to do certain activities. Finally, I started to focus only on my health, not convincing them. It was a relief.

So how do you NOT feel so alone when family, friends and the medical community are not necessarily on your side? Setting healthy boundaries is very important. I’ve gotten very good at that now. I have fired doctors, ended friendships that no longer served me and spent less time with family members that were hurtful. But… I do surround myself with friends who care about me despite being sick, although there aren’t too many, I’m happy with the couple. I see some of the best specialists and ask for referrals from them to see others.

But the most important support is meeting others with the same disorders, mostly online. Because I’m all about keeping a positive attitude even in the face of very unpleasant situations, I “hang out” with the more positive people. You can find amazing support, caring, concern, compassion and friendship in these communities. I do not go there to complain about the disorders and being sick. We all have to vent at times, but generally, we help keep each other up and offer support and love at a level difficult for healthy people to comprehend.

Reach out to others. If you want to connect to a supportive community for one of these disorders and cannot find it, I will be happy to assist you . You can either email me or use my contact form found on the side and bottom of each page of my website and on my contact tab. You are NOT alone. And you may develop the most incredible friendships because we understand. Comments are always welcomed below.Awake and feeeling alone