Grieving Archives - Page 2 of 2

Trigger warning: loss and miscarriage

A little back story, I was diagnosed with 3 chronic illnesses (rheumatoid arthritis, fibromyalgia, and lupus) when I was 17 and then after a car accident, they were in back to back flares and fighting which day they would “one-up” each other.

I tried to run off my husband by scaring him away by describing in detail the “horrors” of being a caretaker to me would be. He stuck it through with me and we got married August 8, 2014. Soon after, he had asked me to talk to my doctors about the possibility of getting pregnant. After making multiple appointments and talking with every doctor and specialist, we got the green light to actually try to get pregnant.

The start of my guilt of being a parent kicked in and never left.

I struggled with accepting that I could get pregnant after being told no for so many years. I wanted to try though since my husband was so excited. On February 14, 2015, we had our first miscarriage. The start of it as a telltale sign that it was going to happen was that my lupus flared up and I just could tell something wasn’t right.

The guilt set in fast and hard that my child didn’t survive because of my body, because of my chronically ill body. I spiraled into a depression where everything made me cry. Cat crossing the street, tears, a child laughing on the tv show, tears, husband made dinner like he did every night, tears. My lupus flare ended when I had a second miscarriage on November 18, 2015; the day before my husband’s birthday and the day I was going to surprise him with the news. I didn’t want to keep trying after that since my emotions and guilt just kept getting worse.

The summer of 2016, I was looking at puppies as a prospective service dog to replace my service dog since she was getting old. I picked up the puppy in September, and a few short weeks later I found out I was pregnant again. I was so afraid to tell my husband, let alone get excited for any check up because of being afraid. Fast forward to June 20, 2017, I had our adorable daughter, I will call “R”, at 10:16 am. My husband was ecstatic and I was reserved and quiet. I struggled with holding her and bonding because I felt guilty.

I felt guilty for a lot of things

1. R survived, but my body failed me twice and I couldn’t stop thinking about the two I lost and what they would have been like.

2. I kept thinking about how R’s life will be different because I, her mom, is disabled.

3. I couldn’t stop thinking about how much of a burden it was going to be on my husband because my chronic illnesses/disabilities are unpredictable.

4. Feeling like a failure as a mom already because I cannot be a normal parent.

Having a child and dealing with guilt while chronically ill

It took about 6 weeks after R was born before I was willing to start trying to bond with her. I had the guilt from that because I knew that the early stages of bonding were beneficial. On top of that, I was returning to work towards the last week of August.

I struggled with every milestone she made, whether it was early or not, and then questioned whether it was because I was disabled that she would develop them early. I struggled when she started playing and growing up “too fast” in my mind because I knew that my chronic illnesses were causing me to miss some of what she was learning and growing.

A happy surprise!

I got pregnant with our second daughter around R’s first birthday, this one was a surprise to us, but we knew we would love her. During my pregnancy, I had the guilt of missing milestones for R because of me being extra tired and exhausted. It hurt to tell R over and over again that “mommy is struggling today and can’t hold you/play with you/read to you”. When I was getting closer to having our second daughter I cried over having to leave R with my dad while my husband, my mom, and I were in the hospital. I was taking away her playmate (my new service dog) and her regular babysitter (my mom).

My guilt was at an all-time high after I gave birth to our second daughter, February 14, 2019, I’ll call her “W”. I knew I was turning R’s world upside down and “forcing” her to have to learn what all was going on and have to share her precious mommy time with another one. Trying to split time evenly is hard, especially since my rheumatoid arthritis flared up right after I gave birth.

As I have been slowly recovering from giving birth, I have been slowly getting accustomed to two children, and having to learn to ask for help a lot more. This guilt will continue throughout my daughters growing up and I will have to cope with it.

I will need to breathe through their difficult questions as they grow up and realize just how different their mom is compared to their friend’s parents. I will also have to deal with the guilt that I am adding/putting more stress upon my husband with having to help raise our daughters and having to step into the caregiver role from time to time and more often as my chronic illnesses/disabilities progress.

I have realized that my guilt will come in waves and I will have to deal with them as they come. It is just like the stages of grieving that I have gone through and continue to go through as my chronic illnesses/disabilities progress. It is hard to reach out and talk to others about life, but I have learned to find someone to talk to that I can trust.

The Guilt of Being a Parent and Chronically Ill

Now it’s time for me to spend a little time with W (only 12 days old) and pray that R (20 months old) doesn’t wake up calling me.

About the Author

The grief cycle, as in following the death of a loved one, is something that we are probably all familiar with. The same thing happens when we are hit with a diagnosis that changes our lives, and my life changed drastically when the chronic illness diagnoses started rolling in and in the years previously when no one knew what was wrong.

Before The Diagnosis

As a teenager, I was a dancer: ballet, tap, modern, and Irish dancing. I played netball and hockey, loved trampolining, and either cycled or walked two miles to and from school every day. On the surface, I appeared fit and healthy.

Yet I was constantly being labeled as clumsy due to a catalogue of weird injuries resulting in the constant annoyance of the school matron and many trips to either the minor injuries clinic or the emergency department. During secondary school, I was displaying even more strange symptoms.

By the time I reached my GCSE years, I was fighting kidney, throat, and ear infections more often than I wasn’t. I had periods of extended, unexplained dizziness and my joints (in particular my fingers and right knee) frequently started to have a mind of their own.

Things went even further downhill when I was in 6th form that I have a gap in my memory. I have actually “lost” about six months of my life.

During that period of time, I was in so much pain and needed such a combination of medications to deal with it at age 18, while I was battling through A Levels, (despite being told to take a year out) that I can’t remember taking my final A Level exams. Which isn’t necessarily a bad thing to be honest, but I’ve lost a lot of other memories which would have been nice to have.

Because no one was looking for Ehlers-Danlos Syndrome (EDS), I remained undiagnosed until the age of 22.

The Knowing

You would think that because of all of this, getting a diagnosis of EDS, along with the added bonus of fibromyalgia at the age of 22, it would have been a relief. It was. Sort of.

I finally had reasons as to why I felt so rubbish at times. And I wasn’t imagining my joints popping in and out, it was actually happening. I wasn’t being pathetic when I was ill, I do have a weak immune system. The pain wasn’t in my head, it was real.

But at the same time the rush of relief at being told I have a diagnosis hit me, a door was being shut and locked on my past life. You see, I was being told I have life-long illnesses which are probably going to get worse. Which brings us back to grief.

I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years. It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that. I needed to grieve.

I struggled to get my head around that concept initially. I wasn’t dead and I wasn’t dying. However, I wasn’t going to get better either.

I was no longer “ME”.

Denial

Personally, I haven’t found the grieving process for my old life linear. Some days, I can be rational and logical about things. Other days, I can sit and cry and mourn. At this point, the latter is becoming more rare.

Still, sometimes, I can’t make sense of what is happening.

There are times I am numb to all my feelings surrounding chronic illness and I like to think that it isn’t there. There are days when this thought process makes life possible. It allows me to get from one day to the next with as little fall-out as possible. I know this denial isn’t always healthy, but I see it as a basic survival method. And it is a component of grieving.

At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well. I still struggle with the fact that I am not the same as my friends. Because of my denial, I can be reckless, not pay attention to my body, and overdo it, which results in me ending up in bed needing to recover.

Anger

I try not to go down the “why me?” route. It’s a dark hole. But being the only person in my family with EDS, it’s still hard to get my head around why exactly it did happen to me. And I’m not an angry person. It takes a lot for me to feel anger about a situation. I don’t really like the sensation of being angry. But EDS has changed that too. There are times now when I could happily go on a rampage, screaming and swearing about how unjust everything is.

And a sure-fire way of triggering my anger is making uneducated and insulting comments about chronic illness around me.

Do you think that I’m lucky having afternoon naps or needing to spend the day in bed? It is natural to feel deserted and abandoned the majority of the time when we are sick.

We also live in a society that fears anger, but I see anger as strength. It can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change. Such as the change EDS brought to my life. This is something that can’t ever be answered. The “Why me?” thought process is totally natural.

Bargaining

While I was going through all my undiagnosed symptomology, I found myself bargaining, mainly with myself, as a way of preventing a possible earth-shattering diagnosis. I was in a very conflicted place; both wanting a diagnosis and fearing it. I decided that if I looked after my body better, I could stop myself from being unwell.

So I would swim every day, eat clean, take all the supplements recommended, and actually listen to what my body was telling me. I wanted to go back in time and not dance as much or do the sports which put unnecessary strain on my body.

But finding fault in my own actions and choices as such were not the reasons that I developed EDS. I can thank gene mutation for that. Maybe my joints won’t suffer quite as much as I get older if I didn’t do the things I did as a child, but I enjoyed dance so I really try not to view it as something that I regret.

Depression

At some point, I realized I was having periods of depression. The depression stage of grieving feels as though it will last forever. At the moment, I think this is the stage that I keep revisiting.

It’s important to understand that having depression around a diagnosis is not the same as the depression of mental illness, though there is no shame in either and neither should be taken lightly.

The depression we feel after a diagnosis is an appropriate response to a great loss or change. At times, I’ve found myself withdrawing from life or left in a pit of intense sadness. Chronic illness can feel like a life sentence. The daily uncertainty is scary. I can’t predict how my body is going to feel or how much pain I might be in from one day to the next.

I’m not a flake but it sure seems that way. I will make plans. But then I’ll need to cancel plans because I’m too unwell. But, due to the fact that I don’t ever look ‘sick’, it tests every person you know. It takes a very understanding family or group of friends to pull you through the depression.

Acceptance

The final stage of grieving is acceptance. Acceptance is often confused with the notion of being “fine” or “okay” with what has happened, or with whatever caused the grief in the first place. This is not the case. I don’t think that I’ll ever feel fully okay about my diagnoses. And I definitely don’t like my new reality. But I’m learning to accept it. I’m learning how to make living with it easier.

Having friends who are going through something similar helps so much. They understand on a level that no one else does, or ever can. Along with this, I have learned that not everyone will get it. And that that’s more of a reflection on them than it is on me.

Now, whenever possible, instead of denying my feelings, I listen to my needs and I adapt my lifestyle. I continue to be able to live. Just with a different set of goals and dreams. Yes, I am not the healthy person that I was ten years old. But slowly, I am adapting to that.

About the Author:

Laura was diagnosed in April 2015 with Ehlers-Danlos Syndrome and fibromyalgia; since then reactive arthritis has been added to the list. She also has various mental illnesses for which she is about raising awareness and reducing some of the stigma held over mental and chronic illnesses. Laura is using this opportunity to talk about about being a spoonie. She blogs about what life is like as a professional sick kid at Confessions of a Zebra.

Category: Grieving

The Guilt of Being a Parent and Chronically Ill