If there’s one thing we all have in common, regardless of ability or condition or quantity of conditions, is that we all have a family. And at some point, we’ve more likely than not wanted to either go to said family for support, information, or simply have them there as a part of our journey.

I’ll be the first to say it, family sucks. 9 times out of 10, we don’t have the support we need or we don’t know how to approach getting that support. The concept of parents and children interacting in a different role is often foreign, but when it comes down to having chronic illnesses, mental illnesses, and disabilities the development of a strong relationship between parent and child is a huge factor in how we develop as people and how we interact with our conditions and society later in life.

I was inspired by one of my Twitter followers to explore this topic further. She expressed that her parents forcing her to attend regular school and interact “normally” when she was born with hearing loss was extremely frustrating. This was in response to the #AbledsAreWeird hashtag started by twitter user and advocate @Imani_Barbarin.

I want to introduce you to the inspiration for this piece, and her story. Meet Rosie:

Rosie’s impaired hearing abilities were disclosed to her parents shortly after she was born, and as she moved through the early stages of life, her hearing loss was treated as something she should overcome and she should be normal. As a toddler, her mumbling, pointing and attempts at creating signs to replace words were ignored by her parents. Her parents shared the philosophy that if they didn’t indulge her by working with her hearing impairment, Rosie would learn how to properly speak and interact like all other children.

Rosie was fortunate in having two older sisters, one of whom would work incredibly hard to decipher what she was trying to get across and another who would become a constant companion and best friend. Her sisters worked to be inclusive in games and also served as resources when it came to sounding out complicated words and improving reading skills. However, in school Rosie was put in a different situation – she felt like the “dumb kid” due to needing things repeated, felt lazy and was met with the constant bombardment of “why couldn’t” she be like other students in her class.

By age 9, Rosie was aware something was different, and this was confirmed with a hearing test done at her school – where she was the only one called down to the nurses office to take it. By the time she was a preteen, she was aware of discussions that revolved around “disability” and her impairments, but the conversations were still never had directly with her. As a teenager, Rosie was given hearing aids, but often refused to wear them because she had been so primed to be embarrassed and ashamed that she truly needed them.

In her late teen years, Rosie was able to sit down with her mother to understand a bit more of the “why” behind the decisions her parents made and how they chose to raise her. The approach was simple: they didn’t want to treat her any different than a regular kid. Except, in ignoring her disability, they didn’t understand the implications that would have on Rosie’s development and entire life. By choosing to not enroll Rosie in a school for the blind and deaf, opportunities like learning sign language at a young age and being surrounded by peers who shared the same condition were lost. Rosie struggled with mental health, anxiety and has a tendency to isolate herself because of her experience. Now, she is striving to learn sign language as social situations still present difficulties and is working to find a community that accepts her completely – as the deaf community views a slight hearing impairment as an outcast, while hearing communities don’t fully understand the struggles she faces.

It is evident that there’s a huge disconnect. Parent’s want what is best for their kids. Children want to be heard and understood. Often times our siblings can be our best friends or our worst enemies.

Conditions ranging from Chronic Migraine, Hearing loss, Anxiety, Hypopituitarism, Hypothyroidism, Adrenal Insufficiency, Fibromyalgia, Chronic Fatigue, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Disordered Eating, Depression and a host of multiple conditions that all live together can impact us over the course of our lives, but in a vast majority of cases, our conditions began presenting themselves while we were still young and perhaps still living at home.

From hearing Rosie’s story and understanding the huge impact the relationship with her parents had and knowing that there have been plenty of occurrences in my own life where my health was either helped or jeopardized but family members closest to me, I reached out to a wider group to really get a good picture of how the support systems we have in place play an important role in our lives.

One extremely consistent factor, is that the people who have helped make this piece possible have conditions that presented themselves prior to the age of 14.

This means that the very things most individuals take for granted, have been stripped away before most of us have even gotten to high school.

In some cases, we began getting treatments much younger. While everyone else was out walking around the mall with their friends, we spent more time in doctors offices. Worst case, we were exposed to harmful medications that had long lasting impacts and risks that weren’t properly explained. As best described by an individual who started experiencing symptoms at age 5:

“For six years I took shots in my legs three times a week.  It was painful and it triggered, unbeknownst at the time, fibromyalgia.  It also had some other adverse side effects which I wouldn’t find out for years, which was the fact that my bones grew, but unfortunately grew wrong, causing severe joint and spine pain, and eventually osteoporosis so severe that I basically have the bones of a ninety year old person.  The shots helped me grow, but only to about 5’3”.  I started showing symptoms of extreme pain and the doctor didn’t want to believe me.  I had some really bad side effects that even my family saw.  I decided to stop the shots, but the random pains still continued.”

For those struggling with depression at this young age, the well understood social cliques and body image requirements that plague every teenager, can lead to other problems such as eating disorders. Constantly being surrounded by pretty teenage girls and not feeling strong connections to people who are supposed to be closest to us can cause a downward spiral. One individual described: “hearing how fat and ugly i was in middle school took a toll on me. I stopped eating I wouldn’t eat at lunch time and I barely ate the rest of the day. I lost 60 pounds in a year because of my eating disorder. I had teachers pulling me out of the classroom to ask if I was eating.  I had my own mother asking if I was eating whenever I left the house. My mom really tried to help me understand that I was beautiful but living with a mom who teared down her body your whole life you become into this lifestyle that you think you should be doing that. It helped me realize what I was doing to my body and how doing this could really hurt my organs.”

It takes a lot for us to recognize when something is too much. Whether it’s the shots we have to take that are too painful, the habits we’ve developed in response to others being dangerous to our health, or simply that we need to stand up for our needs and know that we can’t participate in life the way able-bodied people do – it’s often our support system that helps get us to this point.

It begs the question of if we look to our support, specifically from our families, were there times where they hindered us, and were there times where they helped us?

Personally, the barriers that existed from my family helped to foster the solutions. In living with my sister, we fought a ton. Everything about my migraines were at its worst and everything she did or suggested jumped out to me as a giant no no. It was so hard to truly see that she was always coming from a genuine place. But, in moving out and really understanding that the largest barrier was the inability to truly communicate all aspects of what I needed and what I was experiencing, addressing that barrier and working to get to a place of understanding made our relationship stronger than ever.

And there are lots of factors that go into the support we have at home. Parents are human too, and they have their faults. Money can be tight. Often times, dads in particular, struggle with the emotional aspect of conditions and tend to have a more rigid approach. Maybe we get treated as a “difficult child” or simply have our concerns ignored. In other cases, sometimes the needs of the entire family come first and you may have to act as a caregiver rather than reaching out and seeking help. Sometimes, our conditions aren’t pronounced enough for us to even have known what could have helped, and it takes hindsight to recognize it.

Our parents can be our champions or our biggest barriers.

In some cases, we’re left being picked on for the help we need and constant obstacles. Although I personally use humor often in regards to my condition, when others are poking fun – or quite literally poking you where it hurts – as a “joke” it can cause serious damage with relationships to parents and siblings. It’s been understood for a long time, especially in younger children, kids will act out when they’re at home because they’re finally in their “safe” space. But, when we encounter parents who brush us off, say our illness doesn’t exist, or simply make comments that aren’t needed, that safe space is gone.

In some cases, that safe place can be found again, but often times the resentment we hold towards our parents and siblings can last a lifetime.

A lot of the resentment can grow from a place of “why are you doing this when you know it hurts me” such as listening to music too loudly, mentioning weight or pushing image issues onto your children or perhaps reinforcing the ideas they already have, and from the natural “distancing” that occurs with friends and family when our conditions do start to interfere. We’re left with this feeling of abandonment. The people who are closest don’t understand, and often times it’s years later that we understand the role we played in pushing them away but at this point apologizing or reconciling the issue would have no use. People move on with their lives. Like as much as I’d love to explain to all of those people in my freshman orientation group at Clemson that grew to despise me, WHY I was feeling the way I was and WHY I really couldn’t interact and HOW my irritability impacted both parties, it’s no use. I transferred and never kept in touch.

Looking back, we don’t believe that our parents truly prevented us in most cases from doing various things or seeking treatment. But there’s things that would have been made easier if we both understood the depths of our conditions. For a young lady with CIDP, she reflected on how much easier her parents made her life: “my parents always encouraged me to do whatever my friends/classmates were doing and they always went out of their way to make sure I was able and it was accessible for me to join, like field trips, birthday parties, etc… my dad does so much research on my condition and has never missed any of my neurologists appointments.” Her parents also worked to make all aspects of their house accessible and made many changes to ensure her life wouldn’t be hindered.

Parents can also help us when we don’t know what we need or can’t help ourselves. One individual shared that: “my mom knows i have anxiety and really tries to keep me calm an relaxed. The one time i had a anxiety attack with her on the car and she brought to such an amazing peaceful state. She does so much for me with my mental health she helps me deal with it and finds ways to enjoy myself still even with it.”

These testimonies go to show how much our parents and close family members can help us. But it also sheds light on where people struggle. What we need are various accommodations, access to certain therapy types, and a simple acknowledgment of our condition.

When asked what it is we wished our parents would have done to have a more positive impact, these were a few of the responses:

• ” If they would’ve listened to me when I told them it felt like my brain was bleeding and not just written it off as an exaggeration. People wonder why I don’t express how much pain I’m in.”
• “The only thing I have ever wanted  was them to truly understand what I deal with and stop trying to fix me.”
• “I wish i could give my dad advice to listen to me and not just shut me down when we talk about something controversial and listen because even my sister told him she thinks she depressed and he didn’t talk to her for 3 days my dad is so closed minded it sucks because i wish i could be more open with what i went through.”

And for me, looking back I really wish I would have simply been listened to and taken more seriously. I had a migraine diagnosis long before adjustments were made in my life to help accommodate them. The year I finally convinced my parents to allow me stay in bed and go in to school late to allow my medication to kick in felt like a huge accomplishment because I had a true acknowledgment of the need to allow my treatments to run their course.

At the end of the day, these stories come from a place of reflection, and there’s certainly an entirely different side that comes from the parent’s perspective that isn’t being explored today. But in reflecting, we can piece things together. Through all the stories shared with me, one thing became extremely clear, in the worst of it: we are suffering alone. There’s individuals who have counted out the pills and hoped they wouldn’t wake up on multiple occasions, whose parents never even knew about the internal struggles. There are people who are forced to go through a tremendous amount of their pain alone, because the simple acknowledgment wasn’t there. We aren’t able to find the support, we may not even be exposed to people in similar situations, and we spend a large amount of time keeping our stories and our pain hidden from the rest of the world. We are reminded that we must hide these illnesses if we want to be successful.

I’m fortunate my story didn’t end when I was 18, leaving my house knowing I’d never speak to most of my family ever again. I’m fortunate at the way my ability to communicate my condition and my needs has developed in a way that those around me can understand and the help I receive is truly optimized. My relationship with my parents and siblings is much stronger now than it was when this all began, and my parents are the foundation of my support.

Know that it’s always an option, and that it isn’t too late. But know that it’s also okay to hold that resentment and to recognize where the root feelings are coming from. It’s okay to not want to forgive someone for the years of pain they’ve caused you.

And Rosie, know that we all our the outcasts of our society. Our conditions, our lived experiences, and the way we perceive life in a different light because of our pain makes it a little harder to be the favorite friend, or the most liked guy in the support group, or even the best partner in a relationship. But as outcasts, we can foster the relationships we want to, and they’ll be much stronger often than the relationships we envy.

So, I’ll leave you on the pieces of advice that have been shared…

“To anyone who has anxiety, I suggest starting a journal either in your phone or in a small book, and anytime you get anxious write down how you’re feeling and remember to breathe. I personally have little quotes and reminders throughout my journal that just remind me like everything is okay and this feeling is temporary.  To any parents, please be understanding.  There are a million and one things that run through our minds especially when we have panic attacks. We are not over exaggerating when we don’t want to get up and go anywhere, when we say I need a minute and we are not being lazy when we don’t want to come out of our rooms and be social. We just need you to be patient with us.”

“To families:  You’re not a doctor.  I know you want to fix what’s wrong with your family member, but it’s not your job to fix them.  It IS your job to love them unconditionally and be there for them.  Even if you can’t comprehend what they’re going through, just be patient, loving, understanding, and accepting that they can’t be who you want them to be.  And don’t get mad at them when they don’t follow your advice.
To caregivers and doctors:  I have lived in my body, you have not… A doctor might have a fancy degree on their wall, may have gone to the best school out there.  May have worked at the best hospital in the country.  May have cured some disease.  I don’t care.  Listen to ME!  Listen to what I say!  I know my body.  So to all caregivers I say… listen to the person.  Don’t just hear the words, but LISTEN to them.”

“Even though my condition is insanely frustrating with no signs of new treatment or cures, I would tell them not to give up on all the other little things that can make huge changes such as exercising, finding the right medicine, and making any changes that can help your child physically succeed better. I think the most important thing is to be educated as much as possible on the conditions and treatments and to not be afraid to try out new medicines and doctors.”

” Be understanding and don’t judge us for what may trigger our anxiety because it can be all different things but try to understand where we are coming from.”

“If you are ever told that someone you love may be losing their hearing, or that a child you know has been diagnosed with hearing loss, the most helpful thing you can do is be patient when talking with them, and make time to sit and have complicated discussions in a quiet pace with few distractions. Taking the time to learn a bit of sign language – even just common phrases for items and requests – will be a big help if you will be spending a lot of time with them, but a lot of deaf people (including myself) do learn to lip read, and can do so if you always make sure you are directly facing them and speak at a normal pace and volume; there’s no need to shout at us to make us understand you! Often times it can actually make it worse for us, because shouting alters the shape of you mouth as you speak, so it often only leads to more confusion on our behalf. Just be patient, take your time with important topics or conversations, and if you’re worried a child may not have heard an instruction clearly, don’t wait for them to mess up and then berate them for not paying attention – simply ask them to repeat it back to you, and gently correct anything they may have misunderstood. A little patience and kindness can go a long way”

“Sit the FUCK (yes all caps) DOWN and listen. Just because you’ve never experienced one, don’t write it off as a headache. Don’t write them off as not being in pain. Help if you can. Cuddle when necessary.”

And from me, for parents and friends and siblings, I spend so much time expressing my story and put a real effort into making it understandable. Reading my blog is the best way you can understand me and what I’m going through and it really hurts me when it’s evident you want to “check in on me” but don’t want a real answer. This exists as my resource, repeating myself is exhausting, and you can still care about me and talk to me about things that don’t regard my condition and I won’t hold it against you for not being invested in every step of my journey. Just don’t pretend. I’m raw and honest with you, I just want the same in return.

A.