National Sarcoidosis Organization

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Family And Friends Support Advice

Posted by Melany Sealy on January 29, 2012 at 5:40 PM

Family & Friends Supportive Advice To Understanding Us

As a patient with chronic illness knows it can be frustrating at its best just to deal with but also just as frustrating when the support they receive is not there. Family and friends who have never dealt with a chronic illness let alone an illness like Sarcoidosis which can affect them in so many ways and each day it is something different. This is where we hope that everyone takes a look at this article and maybe we can all understand one another better.

As many sufferers know it is sometimes hard to articulate how they feel to the average person with out fears of feeling at fault. This happens for many reasons. Many have gone through years of fighting, verbally to be understood. At this point they feel like they are speaking to a brick wall and would rather not speak at all. They have a constant feeling of fatigue and pain that it becomes almost to much to explain themselves to the point of being understood. They feel that all the pain and mental battles they go through, feeling excluded from society and that no one understands them plays a role on their wellness and mental being.

                                                                        

Most people can carry on and lead an active life, until one day they wake up and be in such pain that they cant even get out of bed let alone function in normal life, or they get short of breath and cant even walk suddenly for no apparent reason. Over the period of time they suffer from one symptom to the next recovering but to only get more. Their health declines constantly and it becomes a battle never being able to make plans for the day because they don't know how they will be feeling. Work and home life becomes a battle with some having to give up their hard earned careers due to an unexplainable illness. This also becomes a mental burden which people tend to find hard to cope with.

Some of these frustration that surround them with this disease could be easier to cope with and avoided if they had better information and knowledge as well as support. Stress plays a big role on a persons well being and the more stress in ones life the worse they feel because stress triggers your body to fight much like an illness. The less stress the better.

Some emotional frustrations we hear about are the failure to understand what is happening to them or being able to help themselves. Having no answers, constant feelings of failure and failing to be able to complete tasks in everyday life. Every second of the day no matter what they do their body always reminds them of this disease and no matter how hard they try to fight it, it never goes away. That's when they start to feel like a failure to themselves, a disappointment to their families and children and wanting to be able to do activities that their body just wont allow is difficult.

With some of them, their lives change over night, losing things that they had, adjusting to a different way of life and having no idea what is happening to them. Its hard to think of why, just yesterday you were able to do something and not today. It is mentally exhausting and demanding on our ability to cope with all the unknown's.

To many people who have someone in their lives with this chronic disease called Sarcoidosis, it seems that all they do is complain or hide from life. When it seems like they are complaining it is because they are trying to communicate how they feel and only want you to understand, not necessarily sympathize with them. You may only hear small parts of their problems or maybe more, and at this point they are merely asking for support or an understanding that its ok to feel this way.

You take all this in to account and add the never ending stress of the medical professionals on top of the emotions. From one day to the next it seems there are never ending appointments and test in which the doctors don't always find the answers to what they are looking for. This causes so many mixed feeling for the patient since they are the ones who have to live, breath and deal with all the pains and symptoms that are not always heard or understood.

 

Many tests may seem unnecessary but with this disease it can mimic so many other things and answers are not always there when you need them. It is also mentally draining for most to have tests done and have to sit for periods of time in pain or with these symptoms until the results come in. Many of them have numerous doctors that all will say different things which can make it really hard to understand exactly what is right and what to do about it.

Picture yourself as a family member or friend, waking up one morning short of breath, your body feels full of lead and you feel so tiered and ill with pains that you can hardly function. This is what many patients feel everyday. Try to always put yourself in their shoes for a day or even longer and imagine how it must feel before making any critical comments that may hurt them even more by knowing you just either don't understand or you don't believe them. You have to remember that knowledge is key and also support is essential to a better out come for both supporters and sufferers.

Medical professionals are just as unknowing as most sufferers because of the way the disease affects usually more than one organ at a time and each time it can change symptoms. The disease with a million faces it is called and that is for a reason.

Just imagine yourself as a Sarcoidosis patient...

  • Being told you have something that can be life altering and critical with no cure
  • Unable to breath or function at a normal level most of the time
  • Pains and aches that cant be explained
  • People looking at you funny when they find out your chronically ill
  • People always telling you what to do for the magical cure
  • People that tell you you don't look sick so deal with it and shut up
  • Being unable to enjoy family events or outings
  • Lack of emotional support because surrounding people don't take the time to understand
  • Lack of medical support because it is unknown
  • Having numerous tests and some very invasive

These are only a few points of what they deal with, so be considerate as to how you approch them.

It is like living in a bubble for many because they feel safer to just hide everything they feel inside.

This is not a healthy approach for sufferers or their families. Supporters need to be an ear and shoulder and take the time to learn about the disease as well as find out how the sufferer really feels. There really is no excuse as a family member or friend to a sufferer not to learn as much as possible and to take the time to just put themselves in their shoes and try really hard to understand how they feel and what they go through daily. Ask each other questions until you can see the answers you both need to be a team and manage this disease, its tough but its forever (chronic).

M.Sealy

National Sarcoidosis Organization

2012

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1 Comment

Reply vivian
2:19 PM on May 2, 2012 
This is just how I feel. I stay tried all the time and I never plan anything for I never know how I am going to feel. Thank you for writing this.

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