Living with Hypermobile Ehlers Danlos Syndrome and the Emotional Toll of Antidepressants

Living with a chronic condition like Hypermobile Ehlers Danlos Syndrome (hEDS) is challenging enough. Adding the emotional side effects of antidepressants can make daily life feel even more overwhelming. This post explores the realities of managing hEDS while coping with the emotional numbness that some antidepressants cause. It aims to offer insight, practical advice, and a sense of solidarity for those facing similar struggles.

A wheelchair by a window symbolizing mobility challenges and quiet reflection

Weird sentence to write but I sit here in a quiet house after becoming clean off of antidepressants and working through the realities of actually being disabled.

Three years ago after my sister, Danielle, died, life became too much. While we knew she wasn't going to make it to 80 because of health struggles and an opiod addiction, her death still came as shocking all too much to comprehend. I decided, which was the right choice at the time, to start taking lexapro because therapy alone was not enough to handle the complexities of her life and death. I started with 5mg, slowly moving to 10mg and then 20mg. I still stand by the decision in March of 2023 to get on Lexapro but as time went on and I worked through Danielle's death, it came to a point where the lexapro was completely controlling me.

I remember sitting in bed in December and thinking that I wanted to do things but that my brain and my body just wouldn't connect to make that happen. I just stared at the wall like I was completely helpless but I also couldn't pull together the correct emotions of "this makes me sad" and "this makes me scared".... all I could do was stare.

Within this time frame I had also started physical therapy 3 times a week and was looking at the realities of being disabled and adding more and more diagnosis to my roster. POTS, VVS, Disautonomia, Sjogrens, MCAS, the list goes on and on but again, I knew these were things that I needed to feel and work through but I just couldn't. I equate it to my husband, Justin, telling me what hypoxia feels like. He is trained in these kind of things because he is a pilot but I remember almost verbatim of him telling me that it's like knowing that you need to put the oxygen mask on but the connection just doesn't happen. The end result being of dying of hypoxia because you couldn't make yourself put that mask on. That is what the past 2 years have felt like for me. The knowledge that I am emotionally dying, physically withering away but i just couldn't do anything about it. I had even talked myself into that I needed to stay on the lexapro because only someone completely insane would take themselves off of lexapro after being this chronically ill.

It all came to a head one night when I was (for the lack of a better phrase), feeling like the gastrointestinal gods hated me, that I convinced myself to start weaning off of the lexapro. I have this weird thing when I am vomiting, a fun side effect from being chronically ill, to get on to ticktok between boughs of vomiting because surely seeing a puppy dance to "I look fly, I look good" would pull me out of the gastrointestinal hell that I was in, lol. But almost like Ticktok reading my mind, my feed turned into the effects that SSRIs can have on chronic illness. Both good and bad. The bad was really stacking up for me. I felt like I had no choice but to go to the doctor the next day to start the process of weaning off of lexapro because I am fully aware of how bad it can be to just stop taking it after years of not missing a single dose.

The first drop was 20mg to 10mg, honestly the hardest in all of the decreases. I felt like my mind was clearing up but while my mind was clearing up, my body began to process what the pain I had been living in actually was. Every movement hurt the same but intensified by 10,000% as if my body went "I know you have been living in off of the scale pain but we are going to introduce a new pain chart to you that's even higher.... have fun with that." I tried to hide it because I am fully aware of how much of a bummer I can be sometimes... also, I knew my friends Tammy, Bronna and Carrie would damn well drive themselves to my house and make sure that I wasn't overdoing it if they knew I was in this state. They are the most loving people you will ever meet but they have zero problems getting tough with me out of love because when it comes to overdoing it.... it's me, hi, I'm the problem it's me.

About two weeks later after starting the first decrease, my body was getting used to these feelings and changes so I dropped down from 10mg to 5mg... same feelings happened again... pain on pain on pain but also some new terrifying symptoms had started with my health, again I stayed mostly quiet choosing to focus on my new terrifying symptom. A few weeks later, I went from 5mg to completely off of lexapro. Again, with each decrease came mentally clarity and that oh my gosh, what is with this pain feeling. As days went on the pain has gottten a little better each day. The problem now turned into looking a the aftermath of the past 2-3 years.

Day 1 of 100% clarity felt amazing, I was able to get so much done (for someone with hEDS) and it slowly looked like living the best life that I could was ahead of me. Then the reality of the past few years hit me like a ton of bricks. I have always wanted to be a good friend because, I do infact know some of the best people on earth, but the reality of for the past 3 years I couldn't even pick up the phone to call or text anyone back hit me. It's not that I didn't want to..... it's that I couldn't have that connection in my body to make those simple tasks happen.... so I have friends, again, some of the best people on the planet, that I have let down and I never wanted to do that. I had clients that I did that same thing to. Not on purpose, not out of malice but just because I couldn't. I secluded from my husband and kids more than I should have. I gained weight because the reality of getting up to do anything just wasn't happening and what was later told to me by the doctor, I was eating whatever because my body was looking for any ounce of happiness or emotions. It literally feels like an abusive alchoholic becoming sober and looking back on the chaos and hurt they created. They simply didn't know and in reality, the actual impact of not doing became a feeling of not knowing. Having the clear mind is amazing but damage control has to start now. I am slowly trying to right three years of wrongs and I know that this is going to take some serious time and ownership.

Mental Reality Meets Physcial Reality

Having a clear mind is one wonderful thing but sitting in that dark corner was the reality of my health and what that looks like with a clearer mind. When I got on the lexapro, we knew some of my health challenges but not all of them. Within those past 3 years my health declined sharply.... more than I let others, including my family, see. While none of my diseases and illnesses are terminal, we are aware that I will not get better... that's a tough reality. I can do things to make me feel slightly better but in reality, I have already lived my best physcical days. (That is a tough sentence to write and even tougher take in.) My reality is pain, loss of body mobility and learning to suck it up and use those mobility aids to live a life that can work for me. Luckily for me, with a clearer mind also comes an amazing sense of humor as well was my mother's will to push through things.... or most things.

Both on the Poe and Netschi sides of the family we have what my mother in law refers to as "no brain, no pain" (see my mom rearranging furniture a week after a double mastectomy, my mother in law playing softball on a shattered ankle and Riley dancing on a dislocated/ subluxate ankle.) We are tough women who want to get things done an get them done with out assistance and get it right the first time. (Also a nod to the Russian Gymnast thing my physical therpaist has said about me). I want to have a working body, all the time. I want to do all of the things that life throws at me and I want to do them without limitations. The problem is that while I computed that I was disabled while on the lexapro..... I did not FULLY compute that I was disabled while on lexapro so I am now looking at wondering where the past 3 years went and how my body now relies on a wheelchair and a rollator and crutches and more braces than you can comprehend and physical therapy and new ways to try to find better days. I am still trying to work through if my photography days are over, I am trying to mend friendships, I am trying to make sense of what being disabled looks like when mentally I am not there yet.

Life can be hard. I am not perfect. I am broken in many factors and that is ok but the best I can do for myself is to make sure that I am the best mom, wife and friend I can be. I also need to make sure that I am the best I can be to myself. I need to make my health a top priority and work on trying to feel as good as I can. I am fully aware that I could die tomorrow, I could die when I am 100 or I could have died at 43 like Danielle but those remaining days dont matter if I dont make myself the best I can be to pour into those I truly love. Everything else will fall into place after that.

*** Massive disclaimer*** getting on lexapro was not a bad choice and my experience WILL NOT look like others' experiences on Lexapro. If you feel like you are struggling with your mental health, please make sure that you reach out to a professional and get the help you need. Medicated or not.

Understanding Hypermobile Ehlers Danlos Syndrome

Hypermobile Ehlers Danlos Syndrome is a connective tissue disorder characterized by joint hypermobility, skin elasticity, and tissue fragility. People with hEDS often experience:

• Chronic joint pain and frequent dislocations

• Fatigue due to the body’s constant effort to stabilize joints

• Digestive issues and autonomic dysfunction

• Difficulty with physical activities that others take for granted

  
  

The unpredictable nature of hEDS means that good days can quickly turn into bad days, making planning and consistency difficult.

Daily Life Challenges

Simple tasks like opening jars, walking long distances, or even sitting for extended periods can cause pain or injury. Many with hEDS rely on mobility aids, physical therapy, and pain management strategies to maintain independence.

For example, a person might wake up feeling relatively okay but then suffer a joint subluxation after a minor movement, leading to hours or days of pain and immobility. This unpredictability can cause frustration and anxiety.

The Emotional Impact of Chronic Illness

Living with a chronic condition affects mental health. The constant pain, limitations, and social isolation can lead to depression and anxiety. It is common for people with hEDS to seek help from mental health professionals and sometimes be prescribed antidepressants.

However, the emotional toll of both the illness and the medication can be complex.

Antidepressants and Emotional Numbness

Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs), can help manage depression and anxiety symptoms. But some people experience side effects that include emotional blunting or feeling emotionally flat.

What Emotional Numbness Feels Like

• Reduced ability to feel joy, sadness, or anger

• Feeling detached from oneself or others

• Difficulty connecting with emotions or expressing them

• A sense of being like a “house plant” — alive but emotionally unresponsive

  
  

This side effect can be confusing and distressing, especially when someone is already coping with the emotional strain of a chronic illness.

Balancing Benefits and Side Effects

For many, antidepressants provide relief from severe depression and anxiety, improving quality of life. But when emotional numbness sets in, it can feel like trading one problem for another.

It is important to communicate openly with healthcare providers about these side effects. Adjusting medication type or dosage, or adding therapy, can sometimes help restore emotional range.

Practical Tips for Managing Both Conditions

Living with hEDS and coping with antidepressant side effects requires a multi-faceted approach.

1. Build a Support Network

• Connect with others who have hEDS through support groups or online communities.

• Share experiences about medication side effects to learn coping strategies.

• Involve family and friends in understanding your challenges.

  
  

2. Prioritize Self-Care

• Use pacing techniques to avoid overexertion and reduce joint injuries.

• Practice gentle exercises like swimming or yoga designed for hypermobility.

• Maintain a balanced diet to support overall health.

  
  

3. Monitor Emotional Health

• Keep a journal to track mood changes and side effects.

• Discuss emotional numbness with your doctor regularly.

• Consider therapy options such as cognitive-behavioral therapy (CBT) to complement medication.

  
  

4. Advocate for Yourself

• Be proactive in medical appointments; prepare questions about symptoms and side effects.

• Seek second opinions if you feel your concerns are not addressed.

• Explore alternative medications or treatments if emotional blunting persists.

  
  

Real-Life Example

One person with hEDS described how starting an SSRI helped reduce their anxiety but left them feeling disconnected from their family. They felt like they were “watching life happen” without truly participating. After discussing this with their psychiatrist, they switched to a different antidepressant and added regular counseling. Over time, their emotional range improved, and they found a better balance between managing mental health and staying connected.

The Importance of Awareness and Understanding

Many people do not realize how physically and emotionally demanding living with hEDS can be. Adding the side effects of antidepressants complicates the picture further. Raising awareness helps reduce stigma and encourages more compassionate care.

Healthcare providers should consider the whole person, not just symptoms, when prescribing treatments. Patients deserve to have their emotional experiences validated and addressed.

Living with hypermobile Ehlers Danlos Syndrome means navigating a body that often feels fragile and unpredictable. When antidepressants dull emotional responses, it can feel like losing a part of oneself. Yet, with support, self-care, and open communication, it is possible to find a path that honors both physical and emotional well-being.