This has been on my mind for a very long time now (probably for over a year and a half) and I just need to let it all out otherwise I am going to burst as I am so angry and upset.

My grandparents are being really horrible to me because of my RSD, I haven't heard anything from them for a very long time now. My nanan came round to our house on Saturday to borrow something but NEVER asked how I was, how I went on in London etc and never came to see me, they just came, got what they wanted and left. This really upset me and hurt me. It breaks my heart because I was always so close to them, saw them daily etc and now I hardly see them at all, It can go months without them getting in touch. I just don't know what to do, half of me wants to go round and tell them exacly how I feel and the other half of me just wants to leave things and let them get in touch. I know that the stress isn't helping me what so ever, I am sick of spending day's crying because of how they are treating me. Me and my mom and dad have tried everything to get them to understand what RSD is including giving them information on the condition, asking them to come to doctor's appointments etc but they wont. My nanan and grandad have only been to hospital once with me the whole time I have had RSD and the time they did go to hospital with me was before I was diagnosed with RSD when I went to ER and my nanan told the Doctor's to just chop my leg off - that really upset me and left me feeling really embarrased.

People tell me that it is because they don't like seeing me the way I am but it isn't because my cousion was diagnosed with cancer just after I was diagnosed with RSD and they were really understanding towards her. Even though I couldn't walk, my mom and me were still having to take my nanan and grandad to hospital to see her!!

I have written them a letter expressing all of the emotions I feel but I am not sure whether to give it to them as my grandad is one of those that can take things the wrong way if he wanted. One of my really good RSD friends who is also a PT also wrote a letter to them very kindly. All I want is for them to understand, come and see me and tell me that everything will be alright. I don't want attention!

Thank you all for listening and sorry for rambling I am just so upset.

Take care,
Alison

I wish I knew what advice to give you, hun. I'm sorry you have to deal with this. It's too bad people don't understand that inaction can do as much damage as action. I wish you the best, Ali.

ohh Ali,


There's a lot of people with different views on things and it sounds like your g-parents are in that category.
Is this your moms parents or your dads?
Do they still call & keep in touch with the rest of your family?

I know it might be hard but what about reaching out to them with a nice card or letter?
asking how they are? what they have been doing? that you have missed having visits from them?
and then maybe add a bit about your PT and things...

I don't know if it will open the communication or not , it might make you feel better than writing an angry/upset letter to them..
just a thought.

Ali I'm so sorry that you are going through this. It just doesn't seem very fair.

I agree with Jo. Maybe just a nice thinking of you card with something nice written inside.

It is so sad when family and friends don't understand what someone goes through with a disease. Good luck Ali and try not to worry. Hopefully things will turn around soon for you.

I'm sorry, that would really hurt my feelings as well. I'm glad you can talk to your parents about it and they understand. Maybe you could share the post you did a couple weeks back about your story (I searched but can't find it now). I learned a lot more about RSD from your post than I have from brochures and internet research. RSD is difficult to understand and sharing your personal challenges and feelings might help them understand better.

Good luck with them.

Hi Ali!

I also agree with Jo, sometimes people just need to see someone reaching out. And sometimes a nice response or letter will put the hurts on them more than a mad or angry letter. People are weird like that, sometimes people dont even know they are being mean or cruel, or even cognitive that their actions or inaction are effecting people.

My family used to run from me because I always wanted to talk about what ails me. At first they were real concerned, but after a while it was a heavy burden to them because they cant do anything, they are helpless. So they would avoid me at all costs, I was a real bummer or downer LOL.

So when the time comes for you to have a one on one visit with them keep the hurting you out of the equation, let them get to know the little girl they remember. They will still see the hurting you, but they wont be pressed to find a way to deal with it.

It wont be long and they will look forward to your visits, and will try to understand the things that dont make sense with this awful disease.

I wish you luck on whatever approach you use

Alison,

Lack of understanding is something that we all struggle with. One of our greatest frustrations is dealing with family and friends who cannot cope with our suffering. Unfortunately, it is easier for them to shut down or tune out RSD because they cannot understand or help you get better.

Jo really gave you excellent advice and I hope that you will give some thought to trying her suggestions of a nice card or letter. Perhaps it will provide a moment of opportunity to make things better.

Please know that we feel and understand your pain. You are never in a situation by yourself and I applaud you for venting your feelings. Venting has helped me even when the situations or circumstances have not changed.

Best Regards,

EJ

Thank you all ever so much for replying - I truly do appreciate it and it is useful just knowing that many people deal with family issues, although of course I am so very sorry that you all have to go through all of that .

I have tried giving my grandma and grandad a letter and a nice card to see if that would help make them understand but it didn't .... I don't think they even got in touch to say Thank You! We have given them all of the information about RSD, asked them to come to my hospital appointments etc but they don't seem to want to listen to anything that I say - I think it may scare them but heck, I am living day in and day out with this illness at such a young age! The grandparents that don't understand are my dads mom and dad - my dad doesn't seem to understand RSD or show much attention so I think that it may run in the family?? My moms dad and his wife are really supportive, it took them time to understand but after dropping a few hints to them and giving them so information about the illness they finally started understanding. My dad's mom and dad don't seem to want to hear anything about the illness what so ever.

I went to see my grandparents today - I only stayed for about 20 minutes but I figured that at least if I went to see them they couldn't say that I am not interested in them and don't tell them anything. I tried explaining a bit about my illness and how I have been doing but everytime I said something about how I was feeling, my grandad would change the subject and move onto something else. It's really strange has my Cousion was diagnosed with Cancer about 2 years ago and they were really supportive towards her but my Uncle's (their son) has just had an Operation on his stomach and they aren't supportive towards him. I tried to talk about things other than my RSD (just in case they didn't want to hear) but I was rather upset by some of the remarks I kept getting from them. I managed to stay calm whilst in their house but has soon as I got in the car with my mom I burst into tears. This is what I am like everytime I go and see them, they always get me waaaay too stressed and I end up sobbing my heart out!! I am one of those people that wont say anything directly to their face, it takes a lot for me to get mad and actually say something.

One of my good RSD friends wrote a letter to my grandparents and I gave it to them today and also explained why she wrote the letter. The ball is in their court now - it's up to them whether they decide to understand things better or not. I am going to give it a few days and see if they get in touch with me (give it time to let things sink in) and then if things don't seem to improve then I will have to say something to them.

Here is what my RSD friend put in case you want to read it - some of you may find it useful:

Dear Alison’s Grandma and Granddad

I would like to introduce myself, my name is Felicia, I am 23 years old and live in New Zealand. I have Complex Regional Pain Syndrome (CRPS or RSD, its medical name is CRPS but RSD is still used widespread) from a simple trip down stairs. I am currently studying at university, half way through my Bachelor of Physiotherapy. This is no easy feat but I am determined to fulfil my dreams and there is no reason to ever give up.

I have had the pleasure and honour of knowing your granddaughter Alison for a great deal of this year, she is a courageous young lady, fighting to hold on to her identity and overcome this terrible condition that is trying to take over her life at such a young age. She gives me strength on my low days and is a great inspiration to many. I hope to be able to meet her in a couple of years if I do well enough to get an overseas placement.

Being diagnosed with CRPS is a hard thing to take as is any life changing medical diagnosis. In reality this is little different from being told you have terminal cancer except with the cancer at least you know that one day soon you will die and be done with all the suffering. With CRPS I often think how nice it would be to know that there was an end in sight rather than day in day out of intense pain.
Doctors know little about how to treat this debilitating condition so we spend a lot of time trying anything they can think of that may help or offer some relief.
This is not to say there is no hope, there is always hope. Medicine is advancing everyday and pain research has uncovered a lot in the last 10 years and we hope more so in the future. But until the day comes when they find a cure or even a reliable management plan, hope is all we have.

Alison is young and this is a positive thing, young people are more likely to cope better with such a diagnosis as they don’t want it to rob them of a life. We have a strong fighting streak and are often too suborn for our own good. This is how we are able to pretend to the world that we are ok even when we are in so much pain we would rather be crying our eyes out.

It makes the world of difference when the people we love simply remember us. This is where you come in and have a very special role…
From what Alison has said in her low moments, she doesn’t feel like you understand or care about her since she got sick. I hope that this is not true (and don’t think for a moment that it is) you both love your granddaughter to bits but it is scary and hard to understand what’s going on or know how to treat her now.

The reality is, all Alison needs right now is her grandparents. She needs them to spend time with her, stop by and ask her how she is doing, what she has been up to, how her day is going and give her a virtual hug when she is hurting too much for a real one.
She needs to know that she has you to fall back on and be there for her, that she doesn’t have to continue with her pretending in your presence, that you love her and support her and care about her and understand that she is fighting for her life in a way that is so hard to understand unless you are fighting in the same way.

She needs you to be there when she is sick of being strong and needs someone else to be strong for her; it is such a wearying existence having to always hold up and never feel like a little girl protected by her family. Even though everyone is powerless to make everything go away, just the knowledge that you are there to help her be strong can make the world of difference.

I understand this is hard for you and maybe you don’t even realise you are not doing it, maybe you think you are helping and are waiting for Alison to say “I need you”. The thing is it is so hard to ask for help sometimes and we wish that others would just know we need it. I hope you understand where I am coming from, simply a friend of Alison’s feeling her pain and knowing what she is going through but then understanding how you may be feeling and not even knowing that she is hurting.

I hope you see this as a letter full of hope and courage so that you can help your granddaughter rise up to the challenge that is the reality she faces every day. I know how much you love her and wish she wasn’t hurting but I hope I have helped you understand how important you are in her life and that being there for her would make such a difference to how she is able to face each and every day with this life sentence that is rsd. Family is so important and I’m sure you understand that better than anybody.


Yours sincerely
Felicia Clark

P.S I have enclosed a copy of an ‘interview’ I did a few months back to spread awareness to others about how a person with rsd feels inside everyday…

I will keep you all updated and thanks ever so much once again for all of the best wishes and suggestions.

Love, Alison

What a great RSD friend you have, Ali! Very nice letter, too.

I hope your grandparents will wake up and realize what they are missing by not being close to their cute granddaughter, Ali.

You are such a sweetheart. It is beyond me to know how they can continue to resist you.

You are right, though: The ball is in their court. I hope they have enough sense and decency to at least try to make amends.

I'm old enough to be your grandma should you decide you need a substitute!

Aww thanks Twinkletoes, you are so sweet!! I truly appreciate all of your kind words

I will keep you all updated once I hear anything from my grandparents.

Thank you ever so much!

Love, Alison