What is in My Head and Why

If there is one thing I do NOT want to hear you say or even suggest it is that this illness only exists in my head! Some seem to think that if only I would do this or do that, think this way or not that way I wouldn't be sick. It would be nice if it was as simple (or difficult) as all that but its not. These illnesses are very real. Even the CDC has information on their site on the many researchers who are investigating them. Unfortunately there is not enough research and probably not of the right type going on yet. Everyone is looking for a magic cure, typically a pill. With these illnesses it is most likely a combination of things that causes them and a combination of things needed to get better. Most researchers are looking at environment toxins and viruses as being the culprit. These illness do affect the brain. Studies have shown abnormality in such things as blood flow and biochemical balances and glands. But you can read about that elsewhere. What I am going to tell you about is the emotional aspects of dealing with chronic illness, particular chronic illnesses that the general public has not accepted as real yet. Some of these emotional reactions are directly caused by chemical and other exposures and some are from living day to day with the illnesses. I'm not going to separate them here.

Fear While no one wants to talk about it this is a big issue. First these are illnesses which are often slow in being diagnosed. The symptoms are so many, so varied, so weird and often mimic other serious illnesses. Its hard to imagine you can be this sick and not die. For people with MCS there is the real threat that you may get exposed to something that could kill you. Then there is fear of always being in pain and/or that you won't be able to handle it. There is also fears of rejection and other things I'll mention later. Fear is not fun to deal with!
 

 

Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

Its so easy to be afraid of so many things when you're ill. Sometimes it feels like the world itself is attacking you. In some ways becoming ill is like having entered a new land, a land full of fierce giants and enemies. (Symptoms etc.) But just as the Lord was with Israel against their foes so will He be there with us. There is nothing impossible for Him. Even through the valleys He is with us. He will see us through.

 

Anger Ok so I don't want to admit this one but I confess at times I feel angry. They say this is a stage of grief and indeed we have suffered great losses. Usually I don't feel angry unless I've seen others who've been treated unfairly, or neglected, who have so many special needs but receive no help. Typically it doesn't take along after becoming ill where you're unable to work and function normally before you find that there are other repercussions you hadn't even thought about like finances and friendships, having basic needs taken care of and learning that even if there is any assistance its sadly lacking and waaaay short of meeting the minimum necessities. This is especially true for young people who never got a start in the work place and had nothing paid into Social Security. Its also true for women who made their life's work their home and family. No one likes being dependent and now you've found there is nothing you can depend on.
 

In your anger do not sin. Eph. 4 : 27

We all feel angry sometimes. Anger itself is not a sin but acting badly out of anger is. I think usually when we feel angry it is towards all the injustices we and feel so helpless to do anything about. We feel abandon and forgotten, neglected and sometimes even abused. Its comforting to know that we can go before our King and know that HE understands. He's been there too. It also helps to know that we are not in this alone defenseless for He is on our side. There is nothing wrong with taking your anger and hurts to the Lord and telling Him about them. It is difficult not to lash back sometimes when others mistreat us especially when we feel so ill we have little emotional self protection left. But if the world is ever going to know what God's way of behaving is we'd better show them by our own example.

 

Envy Seeing green from time to time is normal too. Its not that you want to see family and friends do without too, its more than you wish so badly you could do something too. I find this is especially true when people around me have made the assumption that I don't CARE to do this or that, that I somehow LIKE being ill. Its like a friend told me once. She envied the little old gray-haired lady next door who would go out on jogs and do yardwork!
 

 

A heart at peace gives life to the body but envy rots the bones. Pr. 14 : 30

Don't know about you all but I want to be healthy and I sure don't want to rot my bones! Typically being chronically ill means being chronically poorer than others. Sometimes looking around at all the things that would make life a lot easier but we can't afford to buy then seeing it makes us envy the owner. I've thought about this scripture and what strikes me is that the constant yearning for something you can't have or feelings of wanting to be someone else who has those things erodes 'self'. It devalues us. And leaves us not liking ourselves or our position even less. How can we have life in us if we're constantly fighting against that life? The very thing that gives us strength to stand up, hold our position, (bones) we're chopping away at with all the envy of others and their things or postion...

 

Discouragement I've read all the research, tried all the suggestions, pushed myself, let myself rest and NOTHING seems to make much difference. Friends don't understand why I won't come to their house, family thinks I'm faking it. If I do more to take care of myself someone thinks I'm selfish or neglecting my family. If I take care of everyone else first I get sicker. Even with working there's a problem. What little assistance is there for some people can be stripped to nothing if they try to help themselves a little. Its all of nothing. Discouragement is what we face daily.
 

 

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15 : 13

It occurred to me one day that when I've gotten most discouraged it was because I had been putting my hope in things or people who had let me down. Everything I'd tried to do had turned to ashes or been like butting my head against the wall. I'd tried so hard it seemed like there was no direction left to go and no resolutions in sight anywhere. Within myself, through my eyes there was no hope left. But then I saw this scripture and realized that our hope is not do to things or circumstances that we can see. Our hope is a gift from the Lord. HE is our hope and the hope that He gives brings joy and peace and that hope begets hope!

 

Depression Some people with these chronic illnesses suffer greatly from depression. They get even more depressed listening to people saying that they're ill BECAUSE their depressed. Like they're not really ill, only depressed therefore THEY should be able to do something about it. This simply is NOT true. These illnesses affect the brain and brain function. Some of the medications needed do too. Top that off with how much they've had to give up to remain at the level they are at and you can surely see why anyone would be depressed! Being told your depressed is not encouraging or uplifting either.
 

 

Out of the depths I cry to you O Lord: O Lord, hear my voice. Let your ears be attentive to my cry for mercy. Ps 130 : 1

Only the Lord can help with depression that is biological, another affect of the illness on the brain. Medications can help along with making sure to take the best care of yourself that you can like eating well and getting enough rest. For the depression that comes from being sick all the time, unable to function normally, feeling so limited it helps me to do what David did, meditate on my bed on the things the Lord has done in the past, not just for me but for His people. I've read biographies of men who went through fierce trails and overcame. I think of cases where it seemed most hopeless yet they were delivered. I also try not to be too concerned with feeling blue as if somehow that is wrong to feel. But I urge any of you who are reading this who have a friend or loved one who is chronically ill and depressed to be a soft warm light for them. Don't try to force them out of it or condemn them for it. Just be there with a listening ear and a shoulder to lean on.

 

Loneliness

I can't begin to tell you in words about the aloneness and loneliness those of us who are fairly homebound feel. Loneliness and aloneness are different. We feel both. No matter how many others you may know with the same illness you still are very much alone in your own body. All illnesses are like this. It does help to be part of a support group of some sort though. Then there is the loneliness. We're isolated, unable to go to social functions without paying a major price with our health, for some life risking. After a while friends fall away as you can no longer do things with them. Some get sick of hearing about all the symptoms or frustrated with not being able to help. Most public meeting places are filled with things unsafe for people with MCS. Most people with CFS or FM don't have the stamina to participate. So over time they find themselves more and more apart from the rest of the world. Days on end without a change in scenery can give you cabin fever plus! You get stir crazy but don't even have energy to stir! You may crave to have a friend come visit only to find that when they come you get so wiped out from trying to behave 'healthy' that you wish they'd cut the visit short. You fear friends and family will take that wrong and you don't want to hurt them either.

 

 

A man of many companions may come to ruin, but there is a friend who sticks closer than a brother. Pr. 18 : 24

...do unto others what you would have them do to you, for this sums up the Law and the Prophets. Matt. 7 : 12

For I was hungry and you gave me something to eat, I was thirstily and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me. Matt 25 :35

The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me'. Matt. 25 : 40

 

Grief

After the initial shock of being ill comes a time of grieving. There are real losses encountered. Loss of health, jobs, abilities, money, lifestyle and often friendships and other relationships. There's a loss of income, loss of enjoyments, and loss of freedom. Chronic illnesses especially those like these that affect every part of your being cause you to feel like you've lost your old self. With the recognition of those losses comes a time of mourning. Like other illnesses a period of feeling angry follows too. Wanting to fight back. These losses are very real and some are forever.

 

Blessed are those that mourn for they shall be comforted. Matt. 5 : 4

 

Rejection

I'm afraid that way too often people who are disabled, unable to work or participate, having weird sounding invisible symptoms end up feeling rejected. Sometimes that is because they are being rejected. We live in a society who values most productivity. Most self worth comes from what you 'do' and we can't do much. Sometimes we are shunned, sometimes actually told off! When others behave like this I try to remember that they are afraid. Our illness scares them. It exposes their own vulnerability and people feel very comfortable when they feel vulnerable. We are a reminder to them that nothing in life is sure, nothing forever. So it is often easier for them to deny that we are really ill than to face that possibility themselves. Sometimes the rejection comes from indirect reasons lack lack of income. But whatever the reason it hurts to feel rejected. Sometimes Christians who are ill even feel rejected by their own churches.

 

 

A despairing man should have the devotion of his friends, even though he forsakes the fear of the Almighty. But my brothers are as undependable as intermittent streams, as the streams that overflow when darkened by thawing ice and swollen with milting snow, but that cease to flow in the dry season, and in the heat vanish from their channels. ...Now you too have proved to be of no help; you see something dreadful and are afraid. Job 6 : 14 - 21

Be completely humble and gentle; be patient, bearing with one another in love. Eph 4: 2

Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen....Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Eph 4 : 29

If anyone does not provide for his relatives, and especially for his immediate family, he has denied the faith and is worse than an unbeliever. 1 Tim. 5 : 8

(I believe there are other types of provisions than material ones too)

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with comfort we ourselves have received from God. 2 Cor. 1 : 3

A lesson to the church. Perhaps sometimes people have trials because they do not yet know how to comfort or understand the need for comfort ?

 

Worthlessness

In a society where the first thing people ask you is "what do you do?", meaning 'for a living' its quite easy to feel like you do nothing when you're ill. Many folks with these illnesses don't have the strength or energy to even do ordinary household chores let alone hold a job outside the home too. Even those who don't have the fatigue problem still are very limited because of having to avoid chemicals and dust and mold and other things. So the 'what do you do' question is quite perplexing. Others seem to judge us by that standard too. So what is our worth? All of us who are ill go through this questioning at least periodically, and especially during long periods of 'crashes'. We don't even know who we are anymore. We're sure not like we were pre-illness. We can't play with our kids like we used to, we can't even go out with our spouses. And we feel like we're always needing something, some help. We feel very dependent on others and sometimes we feel that others resent that. We don't want to ask for too much because after all what do we have to offer in return? We live in a society that wants to eliminate imperfect babies and aid chronically ill people to kill themselves, because after all what kind of life could they possibly have???

 

 

Look at the birds of the air; they do not sow or reap or store away in barns, yet your heavenly Father feeds them. Are you not more valuable than they? Matt. 6 : 26

Even Christians have a very hard time comprehending that God loves us because He does, not because of what we do. This, I believe, is one of the hardest lessons to learn but one that chronic illness demands knowing. Before we were formed in the womb He knew us. Surely we weren't working then!

 

Anxious

I get some pretty bizarre symptoms, some of them affect my thinking and some produce anxiety all by themselves. Anxiety is nerve wracking! Its no fun feeling anxious. You feel like you somehow need to guard against the next attack yet have no idea what direction it may come from nor what it may cause. Yes, worry is related to anxiety but while worry may give you wrinkles, anxiety gives you the jitters. Some symptoms produce anxiety like those that interfere with normal breathing or cause rapid heartbeat. Others cause it indirectly , especially pre diagnosis or new symptoms. With invisible illnesses that are not yet understood or even acknowledged by most people the symptoms are often confused with other serious, life threatening conditions. That makes us anxious too.

 

 

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will keep your hearts and minds in Christ Jesus. Phil. 4 : 5-6

 

Confused

Oh boy do I get confused sometimes. I wonder, "Am I nuts? Is this all in my head like so many try to say it is?" I wonder what I should try next, do next. I find myself much like others in this state, questioning the whys of life, wondering what I should do next. And the big thing is 'who to listen to?'. There's so many conflicting reports and so many contrary attitudes and opinions even in Christian quarters. We Christians don't really talk too much on handling adversity and usually get the message that its just not kosher to talk about it or at best to talk with a stiff upper lip and a smile on our face. Sometimes that's not easy to do.

 

 

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight. Don't be wise in your own eyes; fear the Lord and shun evil. This will bring health to your body and nourishment to your bones. Proverbs 3 : 5- 8

 

Weariness

Sometimes we get just plain weary. I know I do. Its more than the crushing fatigue and heaviness the illness causes. Its a weariness of spirit. I get so tired of having to struggle just to make it through the day. I get tired of dealing with 'illness issues', doctors and just plain hearing about illness. Yet its never far from my mind because there it is before my face where I have to deal with it. Some symptoms are pretty hard to ignore like cognitive ones. I get weary.

 

  Praise be to the Lord, Who has given rest to his people Israel just as he promised. Not one world has failed of all the good promised he gave through his servant Moses. May the Lord our God be with us as he was with our fathers; may he never leave or forsake us. May he turn our hearts to him, to walk in all his ways and to keep the commands, decrees and regulations he gave our fathers. And may these words of mine, which I have prayed before the Lord, be near to the Lord our God day and night, that he may uphold the cause of his servant and the cause of his people Israel according to each day's need, so that all the peoples of the earth may know that there is no other. But your hearts must be fully committed to the Lord our God, to live by his decrees and obey his commands, as at this time. 1 Kings 8 : 56 - 61
   
   
There is much more I could say on this subject but I suspect you have read enough. Next time you see someone with a chronic illness talk to them and listen. Put yourself in their shoes even if that means you have to follow through one of their days to understand better. And most importantly, don't judge them.
A Day in the Life... What You Can Do
Home