Why me? This is so unfair,  I didn´t deserve this.  I am sure I could do so much if I wasn´t born with this.  I´ll show them all! I am worthless, I can´t do anything.  I am just a burden to everyone.  I´m going to fail at it, I am sure.  I´ll never be able to do it.  I am sure they make fun of me when I’m not there.

These are all thoughts that at some point have ran through my mind, and that I’ve believed in, with varying degrees of certainty. Some of them still return on grey days, but for the most part they are more positive these days. But It´s a fight, that will probably keep on going until I draw my last breath on this Earth, a fight against my own inner demons who want to push me down. It´s one thing to have a person to hate, to have someone to distance yourself from, but when your own mind is your enemy, things can get pretty scary and dark at times.

Being born with C.P. does something with you, it places certain physical constraints and challenges on you as a person, but a side of it that is often overlooked by traditional follow up and treatment of the condition is that it brands you, it brands you as different, both to society and to other people, but more importantly to yourself. In a society where the overarching ambition is to be just like everyone else, and to be good at everything, to find the perfect partner and live the happy life, the crash can be pretty brutal when you hit the brick wall at some point. And chances are that you will.

 

The dangers of projection:

All humans are by nature social creatures, we often put great importance on how we are viewed by others, but we are also notoriously bad at really knowing how they actually perceive us, even though we think we got it figured out. The problem is that we tend to project how we feel about ourselves on the inside on to other people, often times without even being aware of it. This can become a problem if your own self-esteem and your own self-image is low and negative. Then it´s very easy to think that everyone around you, especially those who you care about a lot, such as family and friends thinks the same as you do. If you view yourself as useless or as a person with many flaws chances are that is what you are going to think other people think about you as well.

When I was in my mid to late teens, even early 20´s and really started to think about the C.P more and more, I projected a lot. There were points when I was so depressed and hated myself so much that I genuinely thought I could not do anything, I genuinely believed I was useless, and a burden to other people, also to my parents. It is easy to look back now and see that my view of myself was a dark and extremely negative way to view reality, but at the time it seemed like the only truth. The mind loves to reinforce thoughts and patterns, unfortunately also negative ones, so once you are stuck in this spiral of negativity it can take a lot of work to get out of it.

Looking back there was a few things I did way too much back then that led to worsen the depression and dig a deeper hole for myself. Back then I often compared living with C.P: SD as living and viewing the world through glass walls, you can see all the normality around you, you can understand it, you can taste it and almost feel it, but yet you are separated from it, you are different, not like “the others”. This is a very dangerous pattern of thought to have, but it´s one that I recognize in myself and several others I have met in my life with C.P or even people without that had some difficulties for other reasons.
This mindset can also give rise to feelings of anger, unjustness, loneliness etc. It is very easy and quite normal I´d say to feel like you are alone, that nobody else understand you, especially those closest to you, and it´s also easy to not say much because you don’t want to be a burden to your parents for example. It’s also very easy to feel angry at the world, to feel like this was all a cruel joke played on you. That is also connected to the second thing I used to do a lot that hurt me.

I used to feel like I didn´t deserve to live this way, that I didn’t deserve to be born with these limitations. While it is true that no one really deserves to be born with any sort of condition or illness, it´s still a very dangerous mindset to adopt, simply because you can´t change certain parts of your existence, the C.P is one of them. Again the human instinct to compare ourselves to others can cause us great harm, we can feel like we are “worse off” than person x or person y, because we have this condition.

I did a few major things to turn around this mentality and make myself an happier person more at peace with myself. So below is a list of advice you should try if you are feeling any of the above thoughts, or feel like you can relate to what I have just described. I hope these can also be helpful to p
parents of children with SD, although I will get onto more parental specific things later on.

 

1. Be kind to yourself.

This sounds easy, but it´s probably one of the hardest, nevertheless it is one of the most crucial steps. If you view yourself in a negative light, you are not going to like yourself very much, and chances are you will treat yourself the same way.
I spent over a year, of every single day, sitting down alone and honestly looking at myself and finding the positives. At first, I didn’t find much, but gradually the list grew longer. I found that starting to be kind to my body was a good first step. This may sound silly or stupid, but lets face it, often times when you have SD, you aren´t that kind to it, actually it´s very easy to not like it very much. But it was very liberating for me to “tell my legs” that I was thankful because they could get me around, granted not as far as everyone else, but at least some distance. I am also very thankful to my hands and arms because they let me do things like use the computer, pick up things, help me eat etc. even though they may not be able to thread a needle all that well, that is very little compared all the things they enable me to do. Sayings these things to yourself isn’t enough, you have to really believe them. And your probably wont the first few days or weeks even, but keep doing this and training your mind like this, and you will, and you will be much better off for doing so. When I got to the point I truly appreciated my body and was thankful for it, I did the exact same thing for my mind, by this time it was a lot easier because my mind was already used to thinking in more positive ways, it´s like a snowball growing and growing. 🙂

 

2. Stop comparing

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Try to avoid comparing yourself to others too much. The fact is that you are a unique individual with completely unique qualities and a unique starting point to experience life. If everyone you ever knew had SD, you wouldn’t think of it as negative or limiting at all, because you would not compare it to anything that is “better”. Try to view things as they are. Life is experienced, and we all experience it differently based on our starting points in life, and factors we can and can’t control. There are things you can´t control like blindness, gender or SD for example, they are what they are, they only become bad when you start saying “Being a man is so much better than being a woman” or “Being able to see is so much better than not seeing” or “My life would be so much better without SD”. You are setting yourself up to suffer if you think like this. If you can see things as they are you wont have this problem as much. Having SD gives you a way to view the world unique to you, because this together with the rest of the influences in your life, environment and genes make up who you are. Because of the SD you have learned how to cope with challenges and adversity from the day you were born, that alone puts you in a position to handle life´s curveballs much better than someone who has floated through life on a bed of roses until now.

 

3. Believe in yourself:

This is really tied to the first point, and isn´t really possible until you achieve that in my opinion, because in order to believe in yourself, you have to be happy with who you are. But nevertheless this is an important step, to stop the habit of putting yourself down and doubting yourself. Of course there will always be doubts that arise from time to time, but if you generally believe in who you are and the good you can contribute to the world it will show effects inn all of the areas in life, work, school, romance etc. Believing in yourself doesn’t mean being arrogant, but rather knowing your own strong points and feeling like you can handle any challenges that come your way, this way we also become far less scared of failure. And the fear of failure can be pretty big if you have something like SD.

 

For Parents:

Even though I am not a parent myself, and as such have no actual experience in what it entails to be a parent to someone like myself and others with SD I have discussed these things with my parents as I got older, and also observed them as I grew up. It can be a challenge, and at times difficult to be a parent for someone with SD, and sometimes it can no doubt feel hard, there is no shame in admitting that. Just because you acknowledge that having a special needs child can be difficult at times, doesn´t mean you love them any less, and it doesn’t make you a bad parent in any way. My parents told me many times that some of the more challenging aspects was finding the line between protecting me from hardships, whether that was bullying, seeing my limitations or feeling different, and still letting me find my own way in life and not being overprotective. I can only imagine what it feels like as a parent when you see your child having a hard time because they have SD, and also since many feel like nobody can understand them, I imagine it can be quite hurtful as a parent when your child chooses to withdraw into itself or shut you out. But it is important to stress that this is not you’re fault in any way, and it doesn’t mean your child doesn’t love you or appreciate your support, because believe me, we do.

I´ve found that feeling that nobody understands you is a quite common thought amongst those with SD, whilst this is common for any teenagers for example, SD or not, the SD can be become an easy mental target and scapegoat growing up. You have something fairly concrete to be angry at, something concrete making you sad. I think as a the best you can do is to try to always encourage your child to believe in themselves, but at the same time that it´s okay to be different and to have limitations. This is admittedly not an easy task, and every child is different, but I’ve found that participating in activities, which made me feel included and “normal”, helped a lot for my self-esteem. Finally it’s important to encourage your child to be kind to themselves. Self-loathing is quite an easy trap to fall into, and it can be hard to watch if your child suffers from this. That’s why I think that it’s important that you tell you’re child and encourage your child to be kind to themselves and appreciative of what they have at an early age. Much like you would teach a child to be thankful for what they have in terms of material possessions or family, friends etc., teaching them to be thankful for what they can achieve rather than what they cannot I feel is crucial to help your child grow up happier. Adversity and grey days are unavoidable, and there will be moments when they have to handle these dark feelings and emotions and dealing with being different. But if you teach them the right tools to battle these thoughts, they are much better prepared than if they were not used to these ways of thinking about their own situation.

Finally, I would like to conclude this article by saying (both to people with SD or C.P and their parents) that if you were to get problems with depression, and in general be in a bad mind state, there is no shame in contacting professionals for help. Sometimes it helps to have another person with an outside perspective help dig your mind out of the dark hole it has found itself in. The mind, even with it´s all it´s power, can also be quite fragile, and mental health problems can happen to anybody. So just as you would go to the doctor if you feel physically sick, going to see someone for your mental challenges is no different, and should not be a taboo. Don’t hesitate to get help if you need it!

I hope this article is of use to some of you out there, and this is only the first of many to come regarding the mental aspects of having SD. This is quite an extensive article, although it tackles many different aspects of mental challenges with having SD, as such in the future I will also endeavor to write more specific articles on specific topics as soon as I have time and post them here under the appropriate section. I hope this site will eventually turn into a good and helpful resource for others, and help to tackle SD trough a personal approach rather than just the “medical way”. I hope to use this website to break taboos and tackle all sorts of issues, even those that are sensitive and personal so that it may benefit others. I hope you will come back and follow the site on a regular basis. 🙂

-Alexander.