ITP is such a strange "illness" I suppose that is why they call it a rare bleeding disorder. The hardest thing about ITP is that those suffering look completely healthy on the outside therefore all the pain is on the inside. Which makes it hard for those around us to know the battle we face each and everyday.
Living with ITP has many ups and downs. It challenges the best of us and can be ruthless not just physically but mentally. Its a very overwhelming condition and support is needed from those around us. However you have to keep in mind that this condition can last years if not a lifetime therefore be aware the ITP patient is in it for the long haul.
So in-light of ITP awareness month below are some tips on how you can offer support to a friend, family or loved one through their journey with ITP.
LISTEN - one of the hardest things for those who are watching a friend, family or loved one go through this experience is that they are unsure of what to say. But in fact we don't need you to say anything at all we just need you to listen. Think about it we already have so many people telling us what to do this includes doctors and other professionals therefore we don't need any further information we just need someone to talk to and that will listen to us.
MAKE US LAUGH - laughter truly is the best medicine, it helps those escape the suffering they may be experiencing therefore if you're up to the challenge make the person who has ITP laugh. It can do a whole lot of good.
OFFER PRACTICAL HELP - living with ITP can be exhausting so helping out around the house (eg. doing the dishes, laundry, help clean) or bringing over lunch etc. can be the best way to offer some practical help.
SUPPORT THOSE AROUND US - those that live with an ITP patient may also be struggling. When a loved one suffers we tend to share the experience with them and if the ITP patient is taking prednisone you can bet your bottom dollar that they are treating their partner like a punching bag. Therefore don't just think about the patient think about those around them and offer some emotional support through this time.
BE MINDFUL - ITP patients have an overactive immune system however the problem with that is that our immune system does not function correctly therefore we cannot be around sick people. So if you or your kids have a cold, flu, belly bug etc. keep your distance and don't put the ITP patient at risk.
BE POLITE - ITP can be exhausting and sometimes it can be hard just to get through a day therefore always ask if its ok to visit or if the ITP patient is up for visitors. If they decline don't take it personally they are just tired.
LET US SLEEP - Because of ITP our bodies are working overtime which means we generally feel pretty tired majority of the time. Therefore let us sleep in, take naps and go to bed early. Sleep is beyond important for an ITP patient.
DON'T SPREAD - some people are very private in regards to their health therefore don't go around sharing their condition with others unless they have advised that they feel comfortable for you to do so.
DON'T ACT LIKE A DOCTOR - whilst your heart may be in the right place in regards to offering advise on treatment and natural remedies however unless you are a professional in that area don't offer useless advise. So many will spend 10 minutes on google and think they have found a cure. Please note doctors have spent years trying to find a cure and there is not one yet. Therefore unless you are a professional or that you have done extensive research do not offer your opinion on treatment.
Then to add to this if you do offer advice and the ITP patient doesn't follow it do not get into the mindset of "oh well she didn't listen to my advice so that is it who cares if she gets sick" remember its more than likely that the ITP patient has done more research than you, they are the ones doing the doctor visits and they know their body better than you would. So you are welcome to share your advise however do not set up expectations.
DO NOT COMPARE - the worst thing you could do is compare your illness to someone else even if you both have ITP. Everyone whom has ITP has different experiences, not all medications work the same (eg. What may work for one ITP patient may not work for the next) and everyone has different platelet levels therefore you cannot compare. All you can do is listen, emphasize and acknowledge.
DON'T TREAT US DIFFERENT - One of the hardest obstacles about ITP is knowing that you are different and cannot do all the things you once were able to do. However please no not treat us differently we want to feel as normal as possible.
TAKE CARE OF US - often we will ignore our condition in order to feel "normal" therefore we sometimes need others to take care of us. If we look tired tell us to take a nap, if we are showing signs of low platelets tell us to call our doctor, if we say we are tired at work maybe tell us to go home. These are all warning signs however we may choose to ignore them and therefore we need help reminding us to take care.